McCaul Urges Colleagues to Pass His Mikaela Naylon Give Kids A Chance Act
WASHINGTON – Today, U.S. Congressman Michael McCaul (R-Texas) – co-chair and founder of the Childhood Cancer Caucus – spoke on the House floor in support of the passage of his bill, the Mikaela Naylon Give Kids a Chance Act. The legislation combines two critical initiatives — the original Give Kids A Chance Act and the Creating Hope Reauthorization Act — to spur drug development for pediatric rare diseases, improve outcomes for patients, and close gaps in pediatric drug research. It was named in honor of Mikaela Naylon, a young woman who courageously advocated for the bill's passage throughout her fight with cancer.
Remarks as delivered:
As chairman of the childhood cancer caucus, I host a yearly childhood cancer summit. ... It’s a time for pediatric cancer patients, survivors, and advocates to rally together around these precious children — the most precious thing we have — and to spread hope to them.
Each year, I meet a child who impacts me in a very strong way. And this year, I was blessed to get to know this beautiful, beautiful young woman by the name of Mikaela Naylon.
I could see in her eyes that she was at the height of her struggle with cancer. It took so much strength to come to the summit, but she believed she was meant to be there. She wanted her presence — and her voice — to help shape our policies and change our world for the better.
We got her into a joint clinical trial at M.D. Anderson and Texas Children’s, but unfortunately, it was too late. Three weeks after our summit, she had to be put on a ventilator, and she passed away.
As Congresswoman Dingell mentioned, we sent videos to her to remind her of how important she is. In her final moments on this earth, I reached out to her and told her that her story would not be forgotten and that her legacy would continue to help thousands of other children. I wanted her to know that her impact would outlive all of us.
So today, in her honor, the United States Congress will vote on the Mikaela Naylon Give Kids A Chance Act.
Sixteen years ago, I founded the Childhood Cancer Caucus because I saw that children with cancer didn’t have a voice here in Washington. We cared about adult treatments, but no one was paying attention to the precious children battling this heartbreaking disease. In fact, they called it "rare orphan diseases."
Since then, we’ve made a change for the better – and today is proof of that. Put simply, this bill gives kids the same chance to beat cancer that adults already have.
Right now, thousands of successful drug combination therapies are being studied and developed for adults, but not for children. The Give Kids a Chance Act will change that. It authorizes the FDA to direct companies to study those same drugs and therapies in children as well.
It will also re-authorize my Creating Hope Act, which created a Pediatric Priority Review Voucher Program within the FDA. It was a first-ever market incentive for pharmaceutical companies to develop childhood cancer treatments. … Since its inception in 2012, 63 vouchers have been awarded for treatments of at least 39 different rare pediatric diseases — 36 of which previously had no FDA-approved treatments. These diseases typically lead to death before a child can reach adulthood. But not anymore.
A dear friend of mine — Dr. Allison from MD Anderson in my home state of Texas — was able to use the voucher program to obtain FDA approval for a treatment called CAR-T immunotherapy. He received the Nobel Prize in Medicine for it, and this voucher program had everything to do with the FDA approval for it.
This breakthrough treatment could change everything, and it has changed everything — not just for kids with cancer, but also for adults.
This bill will keep the successful voucher program going for another five years — fueling more innovation, and more hope for children and families who desperately need it.
So I want to thank all of my friends on the Energy and Commerce Committee for ... helping me get this done. But I also want to recognize the childhood cancer survivors who are in the gallery today.
With 313 cosponsors, this bill has the most bipartisan support in Congress. And that’s because there’s nothing political about a child with cancer. There’s nothing more important than saving the lives of the next generation.
My prayers remain with Mikaela’s family, and we’re honored to have them here with us today: her mother, Kassandra, her father, Doug, [and] her brother Ayden. Thank you for sharing Mikaela’s beautiful story with us.
She represents all the children who have suffered with this heartbreaking disease. And after meeting with many of them over all these years, I can tell you these kids are tougher and more resilient than any adults I’ve ever seen — and they are my biggest inspiration. Many survive, but many don’t. And that needs to change. And losing these kids has been the hardest part of my career over 22 years. But today, I’m encouraged because Mikaela’s legacy and all of their legacies — all those who have died and survived this horrible disease — they will live on in this bill forever.
You know, Mr. Speaker, it's rare in this place that you can pass a bill that will end up saving children's lives. I can think of nothing more important.
So with that, I urge my colleagues to do right by our children and pass the Mikaela Naylon Give Kids A Chance Act without delay.
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