Creating Hope Reauthorization Act

Floor Speech

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Mr. McCAUL. Mr. Speaker, let me thank the ranking member, Mr. Walden, from Oregon for his steadfast support on this issue. I want to thank the chairman for getting to this point where we are back on the floor, and the Energy and Commerce Committee, in general, for its support of this bill 4 years ago and, now, a 4-year reauthorization.

As the founder and co-chair of the Childhood Cancer Caucus, I have met with countless cancer patients and advocates who have asked me for one thing: hope. They want meaningful hope, something realistic and something tangible, better cures, safer treatment, and more research dollars.

So, alongside my colleagues, Mr. Butterfield, Mr. Kelly, and Ms. Speier, we have used the Childhood Cancer Caucus to produce that hope. This caucus has yielded tangible results for the hundreds of thousands of patients, advocates, and parents who were just hoping for better results.

When we first started this caucus over a decade ago, there were only two new drugs developed to specifically treat pediatric cancer in the prior 20 years. I would talk to these children and their parents, and they would tell me that the cancer just had no treatment, or if there was a treatment, it was of a drug developed in the 1960s or older.

Many of these drugs were meant to be used by adults, and their intent was to kill the cancer before it killed the person. That is why Mr. Butterfield and I worked together to pass the original Creating Hope Act in 2011, to try to create a market to get more pediatric cancer and rare disease drugs approved in this country.

Specifically, our bill created a voucher award within the FDA where companies that developed rare pediatric disease drugs have priority on future products that could save kids' lives.

I am happy to report that this program has been very successful. Since 2014 when the first voucher was issued, 22 new drugs for rare diseases in kids have been approved by the FDA, including two drugs for childhood cancers, with more expected on the way.

I have seen, firsthand, the wonders of this program.

In September of 2013, a constituent of mine named Rex Ryan was diagnosed with stage 4 neuroblastoma at just 18 months old. After exhausting all options, Rex was blessed to have received a novel new drug that was developed and approved in part because of the incentive of the Creating Hope Act. Rex is now cancer free and a healthy third grader saved by the drug developed because of this program.

It is for Rex and all the other children who have been saved because of this program and will be saved because of this program that I stand here today in support of the bill.

I think, most remarkably, of a dear friend of mine, Dr. Allison from MD Anderson Cancer Center, who had a childhood cancer clinical trial going and was able to use the voucher program to obtain FDA approval for a treatment now called immunotherapy. Immunotherapy is a breakthrough in cancer treatment not just for children but for all adults. He got the Nobel Prize in medicine for it.

While this bill before us today reauthorizes the program for another 4 years, I would hope to see, when we come back again, that this program will be made permanent. So I look forward to working with my colleagues in the Congress to achieve that goal.

I appreciate the support from the advocates and members of my team, especially my outgoing legislative director, Thomas Rice, who spent countless hours meeting with the advocates, the brains behind the operation, and Nancy Goodman, who gave us all these great ideas to develop four major pieces of legislation. I can't thank Thomas enough for all his great work.

Together, we can and will defeat childhood cancer. It is vital that we keep this program alive so that we keep hope alive for the hundreds of thousands of children and their families who are waiting for the big break of a treatment.

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