Mikaela Naylon Give Kids A Chance Act

Floor Speech

Mr. Speaker, I rise today to share my strong support for H.R. 1262, the Mikaela Naylon Give Kids a Chance Act. I am proud to co-lead this important, bipartisan legislation alongside Representatives Michael McCaul, Dr. Kim Schrier, and Gus Bilirakis.

This bill will accelerate pediatric cancer treatments and expand access to lifesaving therapies for children battling rare diseases.

It is impossible to fully express the pain and the devastation that a family experiences when their child is diagnosed with cancer.

One of the bill's advocates was one that we are all going to talk about, Mikaela Naylon, a 16-year-old girl in Colorado who battled bone cancer. She was a fierce fighter for this bill. She talked to all of us, and we all sent videos to her. Unfortunately, she died on October 30.

Her mother told all of us, the sponsors and the cosponsors of this bill, that we gave her reason to live, and she hopes that other children will not die at her age and that this bill will help save lives.

She supported and spoke on the importance of funding cancer research to be able to help other kids like herself. She was a fighter her entire life, and this lifesaving bill has been renamed in her honor.

There are too many others facing the fight, as Mikaela has, each year. Nearly 16,000 children in just the United States are diagnosed with cancer each year.

Mr. Speaker, 1 in every 285 children in the U.S. will be diagnosed with cancer before they reach 20 years of age. In fact, children comprise as many as half of those living with rare diseases. Yet, here is the reality for those children: Treatment options for children remain extremely limited compared to those for adults.

We know that children respond to cancer treatments differently, but there is limited research on how these therapies impact them. We owe our kids better than that, and their families deserve more.

We need this bill to offer more children a fighting chance. The Give Kids a Chance Act would reauthorize the Food and Drug Administration Priority Review Voucher Program to allow pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases.

Since 2011, 53 PRVs have been awarded for 35 different rare pediatric diseases. Additionally, thousands of successful drug combination therapies are now being studied and developed for adults but not for kids; not for our children.

The Give Kids a Chance Act also authorizes the FDA to direct companies to study a combination of cancer drugs and therapies in pediatric trials, as well. Together, we can show these young children and their families that they are not alone in this fight.

Mr. Speaker, I do thank the 313 cosponsors of this bill for their support, along with Chairman Guthrie and Ranking Member Pallone for their assistance and support for this important bill. It has taken too long to get here today, but we are here. Let's show the kids in this country that we care.

Mr. Speaker, I urge my colleagues to vote ``yes,'' and I reserve the balance of my time.

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Mrs. DINGELL. Mr. Speaker, I am ready to close, but before doing so, I thank my colleague, with whom I have been proud to co-chair the caucus. We both know too many children who have died, but we know a lot who we were able to get help for. We make a commitment to all the families in the gallery, and those who we have not gotten to know, that no matter where the gentleman is going, he and I are in this fight for the rest of our lives. I thank him for all of his work. I am going to miss my colleague.

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