Press Release: Long Covid Families Applauds new proposed legislation for $10 billion Moonshot to fund Long COVID research

Press Release: Long Covid Families applauds new proposed legislation for $10 billion Moonshot to fund Long COVID research


Long Covid Families Applauds new proposed legislation for $10 billion Moonshot to fund Long COVID research

Wednesday, April 10, 2024 – Long Covid Families enthusiastically applauds Senator Bernie Sanders for the draft legislative proposal for a Long COVID Moonshot—$10 billion in research funding over the next 10 years. With an estimated 24 million Americans affected by Long Covid, including 5.8 million children, funding to better understand Long Covid is urgently needed. 

“Long Covid Families applauds Senator Sanders for his commitment to the Long Covid community and funding the research we need to document and understand the impacts of Long Covid,” said Megan Carmilani, co-founder of Long COVID Families. We urge Senator Sanders not to forget children in the Moonshot. We are facing down the largest mass disabling event in generations. More than four years into this pandemic, research funding has lagged far behind the urgent need to understand Long Covid, its impact on children, and treatments that will help them.” 

Long COVID can happen to any child, even if they had mild or no symptoms during their COVID infection. Long COVID affects what a child is able to do during a day, like how they play or if they are able to go to school. Some children may have symptoms that do not go away after their COVID infection; some may start to feel better and then start having new symptoms.

The proposed legislation provides $10 billion over the course of 10 years in NIH Funding to respond to the Long Covid crisis. It establishes a centralized coordinating entity and leadership for Long Covid research activities at NIH and streamlines grant processes to speed research approvals and implementation. It establishes an advisory board to inform research, establishes a database for accessible, de-identified patient data, and requires federal entities to provide public education about the risks of Long Covid. 

“This legislation is an important step forward in confronting Long Covid. Every Senator has someone in their state living with Long Covid. We urge all policymakers to recognize the impact and threat of Long Covid and to support this proposal,” continued Carmilani. “We don’t have the tools we need to protect our kids from Covid, nor from the risk of Long Covid. We need research now to tell us what works to treat these of the long-term, often disabling chronic consequences. We urge the Senate – and Congress – to fund the Moonshot now.” 

Long Covid Families will be providing input on the proposed Moonshot and encourages other Long Covid community members and advocacy organizations to do the same before the April 23 deadline.