A 16-Year-Old Dying of Cancer Just Changed the Law đź’”
Mikaela Naylon came to DC sick from chemo and radiation to fight for kids she’d never meet. Three weeks later she was dead. Yesterday the House unanimously passed legislation with her name on it.
She had osteosarcoma. Bone cancer. Five years of hell starting at age 11.
Rep. Michael McCaul said she could barely stand during the Childhood Cancer Summit but she showed up anyway. She went office to office advocating for the bill. She knew she was dying. She went anyway.
The Mikaela Naylon Give Kids a Chance Act reauthorizes the FDA’s Rare Pediatric Disease Priority Review Voucher Program through 2029. Since 2012, it’s created 63 vouchers for 39 different rare pediatric diseases. 36 of those diseases had ZERO FDA-approved treatments before this program.
Read that again. Thirty-six diseases that killed kids now have treatments because of this voucher system.
The bill also forces FDA to require pediatric trials for cancer drug combinations. Adults get combo therapies. Kids get whatever’s left over. Not anymore.
Her parents Kassandra and Doug watched from the gallery as Congress memorialized their daughter. Her brother Ayden was there. McCaul gave them a Capitol tour. They said Mikaela “faced every day with hope, purpose and a fierce determination to make the world better for the kids who would come after her.”
I founded Stupid Cancer because young adults with cancer had no voice. Mikaela proved kids can be their own best advocates. Even when they’re dying. Especially when they’re dying. And, of course, it goes without saying that THIS IS NOT OK. In 2025. In America. Or anywhere.
But this is what real patient advocacy looks like. Not panels. Not summits. Not awareness campaigns. Not vapid conferences with fancy logos that say the word “patient” in them.
A teenager with bone cancer dragging herself to Capitol Hill to change federal law.
She spent her last conscious days making sure other kids wouldn’t die like she was about to.
The bill passed unanimously. Both parties. No opposition. Because even Congress couldn’t look at a dying child fighting for other dying children and say no.
Mikaela Naylon is dead. Her law is alive. Kids who haven’t been born yet will survive cancers that haven’t been named yet because a 16-year-old refused to die quietly.
That’s a legacy.
Drop a comment for Mikaela’s family. Share this so they know her fight mattered. Tag someone who needs to know what real advocacy looks like.
Are you new here? My condolences and my thanks. Follow along and stay loud with the rest of us. More voices means more pressure on a system that counts on silence
#WeThePatients #PediatricCancer #PatientAdvocacy
SOURCE ➡️ https://www.congress.gov/bill/119th-congress/house-bill/1262/text