This task force should be composed of patient experts, leading COVID-19 and Long Covid researchers, as well as the leading post-viral disease experts, congressional and health agency representatives, public health advisors, and economic advisors.

 

1. Help mobilize and oversee programs that will:

a. Quantify, analyze, and address the number of Longhaulers.

i. Reverse Contact Tracing: Contact by phone or text each person who has tested positive for COVID-19 since the start of the pandemic and inquire about continued symptoms and new diagnoses. Document those who have long-term symptoms and provide necessary resources. (Note that this process will not result in a full count of people with Long Covid, as only those who had access to testing and had a positive test result would be contacted.)

ii. Send automated text or email surveys to people two months post-infection to assess if they have developed Long Covid. Those who do not respond should be followed up with a phone call.

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b. Analyze and address the economic impact of Long Covid by adding questions about Long COVID to the monthly Bureau of Labor Statistics Current Population Survey that ask about new or prolonged symptoms for all members of a family, and employment status. Questions could include:

i. Have you been experiencing new and prolonged symptoms and health issues after a COVID-19 infection or suspected COVID-19 infection?

ii. Are you out of work due to health issues that began after a COVID-19 or suspected COVID-19 infection and for how long? If not out of work, have you been reduced to part-time work due to health issues after a COVID-19 or suspected COVID-19 infection and for how long?

iii. How many people in your household have health issues after a COVID-19 infection or suspected COVID-19 infection?

iv. Has your employment been impacted because you are caring for a member of your household with prolonged or new health issues after a suspected or confirmed COVID-19 infection and if yes for how long?

c. Analyze and address the health impacts of Long Covid.

i. Create a Long COVID insurance program, which can serve as an example of a national healthcare system and future pandemic financial preparedness. This will enable the U.S. to track Long Covid and its associated conditions, to gauge the associated costs, and to budget for future costs.

ii. Help prioritize research by convening with post viral experts and Long Covid patients. 

d. Begin to prepare long-term programs using the information from the above points to provide assistance to Longhaulers and allow these programs to serve as an example for future Pandemic Preparedness Programs for those whose health is impacted by the pandemic.

i. Develop an outline that presents the funding needed for direct assistance to COVID Longhaulers, their medical care, research into Long Covid and its associated conditions, along with continued observation of the community and at minimum, the economic impact over the next 2 decades.

ii. Help oversee Long Covid / Post COVID Care Centers, with the hopes of making them Comprehensive Centers with involvement from Long Covid patient leaders.

iii. Advise our health agencies and government on the pandemic from the Long Covid perspective, and create COVID-19 policies from the data gathered collectively from these programs. This would include disability programs, state benefits programs, mitigation efforts, etc.

 

2. Create a Nationwide Public Awareness Campaign

a. President Biden, Government Officials and Healthcare Leaders must publicly speak about Long COVID to warn and educate the American people about the potential long-term effects of contracting COVID-19 and the difficulties people with Long COVID Face. More awareness and education will hopefully result in better and more informed decisions by the American public.

b. Create informative billboards, commercials, and signage for public spaces and healthcare facilities about Long Covid. The Department of Health and Human Services and Centers for Disease Control and Prevention should be involved with this and coordinate with local Long Covid advocates in these efforts.

c. Share phone numbers, email addresses, and websites for self-reporting of Long Covid symptoms and for information and resources about Long Covid.

d. Educate parents, educators, and coaches about Long Covid in children, including what to look for and how to offer help and accommodations.

e. Educate employers about Long Covid, and how to offer help and accommodations.

f. Educate the public that Long Covid can, and commonly does, occur in young, previously healthy individuals and even those with asymptomatic or mild cases of COVID-19.

g. Educate the public that Long Covid can occur in children, who can develop the same conditions as adults and can become just as disabled.

h. Educate the public that Long Covid can occur even in vaccinated individuals, which makes continued mask wearing and social distancing, in addition to vaccination, essential.

 

We respectfully ask that agencies and organizations review these actions, our letter and estimates, and consider the urgent needs of the Long Covid patient population. We, as patient representatives, are happy to coordinate in the implementation of these action items.