Gabriella Miller Kids First Research Act

Floor Speech

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Mr. KAINE. Mr. President, in 2013, in my first year in the Senate, a 10-year-old child in Virginia, Loudoun County, named Gabriella Miller passed away from an inoperable brain tumor.

Nothing could be worse for a family. Her parents, Ellyn and Mark, and her brother suffered greatly in this. But as many do, in an amazing way, in a mysterious way, in a time of suffering, they turned their tragedy into a cause.

Shortly after I came to the Senate, Mark and Ellyn Miller came to see me and talk to me about their daughter Gabriella.

They asked me a question: Senator, what percentage of medical research in this country is devoted to pediatric conditions?

I thought, well, you know, pediatric--under age 18. Maybe it is 12 percent of the population. So I guessed 12 percent.

They said: Less than 1 percent.

Less than 1 percent of medical research funding in the NIH and other Agencies was devoted to pediatric conditions. There was kind of a--I don't know--it was a conventional wisdom of: No, we don't put research into that, but if we can research adult conditions, we can kind of apply it to pediatric conditions--which everyone here knows that is not the case. Many pediatric conditions are very different than adult conditions.

So I began to work with the Miller family on a bill to increase research at the NIH and other Federal Agencies for pediatric conditions, especially pediatric conditions of the kind that killed Gabriella Miller.

The following year, in 2014, I partnered with Virginia Congressman-- and then a Republican leader in the Senate--Eric Cantor and others to pass the Gabriella Miller Kids First Pediatric Research Program to fund NIH research on pediatric cancer, and the 10-year bill that we passed is up for reauthorization.

I partnered with Senator Jay Moran, my colleague from Kansas, to reauthorize it with the support of colleagues on both sides--numerous, numerous colleagues.

The Republican House has passed a version of this bill. The lead sponsor on the House side is Congresswoman Jennifer Wexton, who is retiring because she has been diagnosed with an aggressive form of supranuclear palsy, which is an advanced form of Parkinson's disease. My colleague Jennifer Wexton is no longer able to speak without an AI- assisted device, but in these last few days of her time in the House, she has made the passing of the reauthorization of the Gabriella Miller Act her chief priority.

The reauthorization was included in the health package in the bipartisan version of the CR bill that we negotiated with the House, but that package was left on the cutting room floor of the CR that was just passed in the House. Advocates of the bill, including Ellyn and Mark Miller and others who care about pediatric research, were bitterly disappointed.

I am going to vote for the CR when it comes over from the House, but if I am going to have to explain to advocates that I share their disappointment in the fact that this 10-year program, which has now produced more than $125 million in research into pediatric cancer, is going to be left on the floor, I have to at least make an effort here on the floor to authorize this program going forward.

The good news is, the bill that Representative Wexton has put in the House was authorized flat funding for another 5 years. I give credit to my colleagues on the Senate HELP Committee because the Gabriella Miller Act was reauthorized in the Senate for 10 years at an increasing level of funding, beginning at the current funding level of $12.5 million a year and escalating to $25 million over the course of 10 years.

But the time is late--no time to fool around. The bill that has passed not only in committee but was passed in the House of Representatives--5-year funding at its current level, $12.5 million a year, to continue to invest in research into children's cancer and pediatric conditions.

I respect my colleague's sincere commitment to responsible Federal budgeting. One of my colleagues, Senator Paul--I have worked with him to hopefully lift an objection that he had to this bill by agreeing to work with him to make sure that there are not other overlapping programs where we are spending money to do the same thing.

We have recently talked about other legislative initiatives that we will work on together, but my understanding as I stand here today is, with this commitment I have made to Senator Paul, he is dropping any objection to including this by unanimous consent.

I think, while it is not everything I hoped and it is not everything the Senate HELP Committee did in a bipartisan way, it would continue this important program.

Gabriella Miller, when she was diagnosed with brain cancer at age 10, didn't go quietly into the good night. I think that is a Dylan Thomas line. She instead said: I am going to raise every bit of money I can for cancer research. In the last year of her life, she raised hundreds of thousands of dollars for cancer research on her own with little bake sales and fundraisers. The brain tumor that was in her brain was the size of a walnut, and she created a nonprofit foundation called the Smashing Walnuts Foundation.

The comments I make tonight and the effort I undertake with Representative Wexton truly are to honor her and to thank her parents for their advocacy. In particular, I want to thank her mother Ellyn Miller, who has been a force of nature in creating this program and keeping it going.

We need to keep it going. It is bipartisan, it is bicameral, and it is making groundbreaking research possible. I ask my colleagues to let it pass into law.

3391 and the Senate proceed to its immediate consideration.
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Mr. KAINE. I know of no further debate on the bill.

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