Mikaela Naylon Give Kids A Chance Act

Floor Speech

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Mr. McCAUL. Mr. Speaker, I thank my dear friend from Georgia (Mr. Carter) for those kind words. I thank Chairman Guthrie, Gus Bilirakis, Mr. Pallone, and, especially, Chairwoman Dingell for their steadfast advocacy for these kids. I can't think of anything more important in my 22 years.

As chairman of the Childhood Cancer Caucus, I host a yearly childhood cancer summit. Mrs. Dingell is a co-chair. It is 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. 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 for her to come to the summit, but she believed that 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 MD Anderson and Texas Children's Hospital, but, unfortunately, it was too late. She had to be put on a ventilator 3 weeks after our summit, 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.

Mr. Speaker, today, in her honor, the United States Congress will vote on the Mikaela Naylon Give Kids a Chance Act.

Mr. Speaker, 16 years ago, I founded the Childhood Cancer Caucus because I saw that children with cancer did not have a voice here in Washington. We cared about adult treatments, but no one was paying attention to the precious children who are battling this heartbreaking disease. In fact, they called it rare orphan diseases.

Since then, we have 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 reauthorize my Creating Hope Reauthorization Act, which created a pediatric review voucher program within the FDA. It was the first-ever market incentive for pharmaceutical companies to develop childhood cancer treatments. Prior to that, there were none.

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 this 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 of it. This breakthrough treatment could change everything, and it has changed everything, not just for kids with cancer, but also for many adults.

This bill will keep this successful voucher program going for another 5 years, fueling more innovation and more hope for children and families who desperately need it.

Mr. Speaker, I thank all of my friends on the Committee on Energy and Commerce--I am not on the committee--who helped me get this bill done. 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 is because there is nothing political about a child with cancer. There is nothing more important than saving the lives of the next generation.

My prayers remain with Mikaela's family, and we are honored to have them here with us today: her mother, Kassandra; her father, Doug; and her brother, Ayden. I thank them for sharing Mikaela's beautiful story with us.

Mikaela represents all the children who have suffered with this heartbreaking disease. After meeting with many of them over all of these years, I can tell you these kids are tougher and more resilient than any adult I have ever seen, and they are truly my biggest inspiration. Many survive, but many don't, and that needs to change. Losing these kids has been the hardest part of my career over 22 years.

Today, I am encouraged because Mikaela's legacy and all of their legacies, all those who have died and survived this horrible disease, will live on in this bill forever.

Mr. Speaker, it is 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.

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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