After the November 2020 election, I was hopeful that the Biden administration would urgently move to fix the issues surrounding long COVID. The disease was estimated to affect 37% of people with a COVID infection in 2021. Patient-led research and other studies indicate that the number is closer to 50%.   

Waiting until now to investigate how the healthcare system can best deliver care for people with long COVID has caused irreparable damage to millions living with the condition.   

The recent Biden memorandum on the long-term effects of COVID doesn’t retroactively rectify the over $10,000 of debt I still have from multiple hospitalizations due to long COVID. Nor does it allow for immediate coverage of alternative treatments or diagnostics, where hurdles remain in getting healthcare providers or insurance approval.   

The memorandum also doesn’t address that healthcare providers still discriminate against BIPOC by not taking us on as patients. It doesn’t fix the well-known systemic racism built into the process of getting social security insurance (SSI) approval. Moreover, the same patient advocates who have made themselves available to the COVID-19 Health Equity Task Force and have been an asset to the members of congress looking to create stand-alone legislation about long COVID have been denied SSI benefits.  

The Biden memorandum claims to be building off the self-purported momentum of the COVID-19 Health Equity Task Force. I respectfully ask, what momentum? 

Now isn’t the time to start research. Instead, we must be implementing action for care. The policy proposals I developed nearly a year ago are below:  

Vaccine hesitancy due to injury   

Solution: Provide guidelines through the Centers for Disease Control and Prevention (CDC) for graded dosing and necessary precautions determined by the myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) community’s experience with other vaccines. Also, the CDC should advise on an antihistamine protocol.   

Remove the red tape that prohibits primary care providers (PCPs) from dispensing doses at the level requested by their patients, whether it’s half or 1/3 of the dose done in increments.   

Overloaded emergency rooms and inadequate care   

Solution: The Covid-19 Health Equity Task Force should publish information on post-viral postural orthostatic tachycardia syndrome (POTS), ME/CFS, and mast cell activation syndrome (MCAS) symptoms, along with protocols for care in highly visible spaces within the medical community.   

Create accredited programs to train emergency room (ER) staff and first responders in recognizing and treating long COVID. Develop a "fast track" system of care in the ER for people with long COVID or a prior COVID infection that presents with POTS, ME/CFS, or MCAS symptoms to ensure immediate relief and prevent worsening symptoms.   

Systemic racism causing racial disparity   

Solution: The Office for Civil Rights (OCR) of the U.S. Department of Health and Human Services (HHS) and State Health Departments should create state and federal tracking systems for discrimination complaints. This will be accompanied by a standardized racial disparity index score for each hospital.   

Create legislation that gives the OCR and HHS authority to investigate hospitals with a marked numerical threshold of disparate care complaints. The organizations should bring hospitals with egregious incidents of racial bias to the federal government's attention.   

Give the HHS the ability to have state health departments adhere to uniform standards (for example, not being able to opt-out of data collection). Additionally, allow them the authority to reduce funding, grants, and more if a hospital doesn’t comply with submitting quarterly reports of racial bias complaints. Have a “consent decree" agreement with a list of changes, penalties, or fines for hospitals to make when they’re found in violation.   

Financial hardship from long COVID  

Solution: Create a long COVID task force to identify and improve hurdles in accessing quality care and recovery from the disease and immediate legislation for long COVID assistance programs. This should be modeled after the HIV and 9/11 victim templates and have an automatic renewal of funding tied to a yearly budget.   

Mandate insurance companies to cover all COVID-related treatments. Expand funding to cover nontraditional medicines and experimental therapies. Streamline and expedite the current application process to qualify for state and federal safety net programs. Forgive prior medical debt incurred related to long COVID treatment or care.   

Misdiagnosis of chronic illness in communities of color  

Solution: Create public service announcements (PSAs) via the HHS to bring awareness to chronic illness symptoms targeted to healthcare professionals and people in marginalized communities.   

Create an automated diagnostic system and guidelines for healthcare providers to pinpoint chronic illnesses based on specific recurring symptoms. Address and alleviate the apprehension of PCPs to diagnose chronic disease.   

If the worsening of symptoms is related to a past COVID infection, forgive all prior medical expenses from the time of infection.   

Inadequate research on long COVID in Kids  

Solution: Create PSAs via the HHS targeted at parents, educators, and pediatricians to bring awareness to the prevalence of long COVID and its common symptoms. Use the CDC’s Healthy Schools guidelines to pinpoint disparate schools needing intervention.   

Create an automated diagnostic system and guidelines for healthcare providers to recognize long COVID in kids based on specific recurring symptoms. Address and alleviate the apprehension of pediatricians to diagnose long COVID or subsets of COVID-induced syndromes.   

Forgive all prior medical expenses if the worsening of symptoms is related to a past COVID infection. Create automatic enrollment in a program for parents to request a pediatric diagnostic test for their children.   

Tracking life expectancy due to health-related issues in marginalized communities   

Solution: Create a large annual study published by the National Institutes of Health (NIH) that tracks patients over several years using medical software to extract data on race, age, gender, and income level. Use artificial intelligence (AI) to find patterns and trends in how those variables affect the probability of proper testing, diagnosis, and treatment.   

Study findings and data should be made public so private sectors can use the information to find solutions.   

Equitable funding allocation  

Solution: Use current CDC demographics of COVID cases to demonstrate the need for long COVID care and create legislation to allocate funds for necessary programs.  

Reallocate funds after the one-year mark based on updated data to ensure that the communities of color most impacted have a proper proportion.  

Historical inaccuracies in science due to racial bias  

Solution: Create an NIH team of scientists of color and social epidemiologists to study past epidemics' social, economic, and health-related impact on communities of color throughout American history by using data generated from the COVID-19 pandemic.   

I'm open to meeting with the Biden administration to discuss in greater detail ways to utilize technology to close gaps in bias and equity policy beyond long COVID. 

Article resources:

• Taquet M, Dercon Q, Luciano S, et al. Incidence, co-occurrence, and evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19. PLOS Medicine. 2021;18(9):e1003773. 
• How many people get “long COVID?” More than half, researchers find. (2021). Penn State University. 
• Memorandum on addressing the long-term effects of covid-19. (2022). The White House. 
• Health equity task force. (2021). The office of minority health. 
• CDC healthy schools. Centers for Disease Control and Prevention.