2024: A turning point
“Nearly 6 million children in our country have been affected by Long COVID.”
Senator Bernie Sanders, then chair of the Senate HELP Committee, August 2024
After our advocacy, Senator Sanders became the first major U.S. official to publicly cite the RECOVER prevalence number. He chaired the Senate HELP Committee, which writes federal health law and oversees the NIH and CDC. Pediatric Long COVID was no longer up for debate.
NIH funded pediatric treatment trial
peer reviewed studies defining Long COVID in children
federal bills we helped write children into
state and county public health agencies share our work
The CDC, the NIH, the American Academy of Pediatrics, and state health departments share our resources. Families and doctors across the country find our work where they already look for answers.
Our record of advocacy and progress since 2021.
Many said children couldn’t get Long COVID. We met with congressional offices, including the office of Senator Tim Kaine.
We contributed to the pediatric provisions of the CARE for Long COVID Act and the Treat Long COVID Act, both coauthored by Senator Kaine. Megan Carmilani became a voting member of the NIH RECOVER Pediatric Coordinating Committee.
Public health departments share our Pediatric Pacing and Management Guide, created with #MEAction. The California Department of Public Health links to our website. We also worked with RECOVER researchers on Talk to Your Doctor.
We brought what we learned from families to the researchers behind the JAMA study that defined Long COVID in children. LCF President Megan Carmilani coauthored it.
We got children into Senator Bernie Sanders’s Long COVID Research Moonshot Act, a $10 billion research bill. That made research for children part of national Long COVID policy.
Read the JAMA study.
We partnered with the NIH on it, and Newsweek featured it.
When we started, we were told there would be no Long COVID treatment trials for children, and we advocated for them. RECOVER TLC, the NIH program that chooses Long COVID treatments to test, asked us which treatment children needed. We recommended low dose naltrexone. In 2025, the NIH announced a pediatric trial of it, the first to study the drug in children. Megan Carmilani also coauthored one of the most viewed JAMA Pediatrics articles of the year and helped characterize Long COVID in early childhood.
Los Angeles County appointed us to public health working groups. With Children’s Hospital Los Angeles and the Los Angeles County Department of Public Health, we are partners on an American Academy of Pediatrics CATCH grant to identify barriers to medical care and education, report what we find, and create guidance for families in English and Spanish.
We have led the way on every major step forward. Together, we won’t stop until no child with Long COVID goes without medical care and education.
