Mikaela Naylon Give Kids A Chance Act

Floor Speech

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Mr. BILIRAKIS. Mr. Speaker, I am rising in strong support of H.R. 1262, the Mikaela Naylon Give Kids a Chance Act, led by my friend, the gentleman from Texas, Congressman McCaul.

This piece of legislation is comprised of bipartisan solutions to increase access to innovative treatments for those living with rare diseases, particularly children and adolescents.

Ten years ago, Mr. Speaker, the idea that we would be able to not just treat but cure sickle cell disease sounded like a dream that was too far out of reach. Today, we are curing sickle cell disease. We are curing spinal muscular atrophy. We are curing hemophilia and blood cancers. These cures are just a few of the success stories attributable to the FDA's Rare Pediatric Disease Priority Review Voucher Program.

The PRV program is a powerful incentive that spurs the development of treatments for rare pediatric diseases, providing a lifeline for patients who require specialized treatments.

I also want to highlight the other provisions in this bill that seek to bolster important components of our healthcare system.

This legislation supports the improvement of the Organ Procurement and Transplantation Network by allowing the Secretary of HHS to collect member registration fees to support the operation of the OPTN.

This bill also helps secure our medical product supply chain by requiring the FDA to establish an office in a country that has signed the Abraham Accords.

I am grateful to Representatives Harshbarger and Vargas for their work to facilitate operations between the FDA and regulatory authorities and innovators in Abraham Accords countries.

Last but not least, this bill also includes a provision championed by Representatives Dunn and Mullin that will ensure more affordable drug options are available to patients faster rather than being delayed by unnecessary red tape.

Mr. Speaker, this bill has one of the largest totals of bipartisan cosponsors of any legislation we will see this Congress.

One of the reasons for that is the tireless work of the patient advocates. They come to our office on a regular basis and tell us their personal stories. It makes such a difference, Mr. Speaker.

This bill now bears the name of one of those heroic kids, Mikaela Naylon, who passed away earlier this year after battling cancer for nearly 6 years. May her memory be eternal. She was 16 years old, and I will never forget the videos.

Throughout her battle, Mikaela was a fierce advocate of this bill to create hope for a cure, not just for herself but for the thousands of kids around the country who are fighting the same fight.

This is a very important bill, and I want to get it to the Senate as soon as possible so it can become law.

Mr. Speaker, I encourage my colleagues to support this bill.

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