Earlier this year Congressional Representatives Gregg Harper, R-Mississippi, and Peter Welch, D-Vermont, crafted a bipartisan bill to take $126 million in federal money over 10 years intended for political conventions and direct it to pediatric research. With a vote of 295 to 103 the 113th Congress today passed H.R. 2019: Kids First Research Act of 2013 inspired by the case of 10 year old brain cancer patient Gabriella Miller. The Bill reprioritizes federal resources by terminating the funding for political party conventions and redirects those funds towards pediatric medical research at the National Institutes of Health (NIH). According to informal cost estimates by the Congressional Budget Office H.R. 2019 would save $126 million over ten years. The Bill would authorize appropriations of the same amount over that ten year period for pediatric research. The bill establishes the Pediatric Research Initiative Fund  and clarifies that all pediatric diseases and disorders are eligible for funding under the Fund, with decisions to be made through the peer-review process established at NIH.

Welch, the Democratic sponsor, says 2019 is a starting point and politicians should find a way to make it work:

 “We’ve got to learn to work together. Gabriella found a way to work for other people, even though she was a little girl who knew she was going to die. But every day, every moment of her life — her young, small, short life — was spent trying to help other people, so why don’t we? Can we just put the battle axes down for a while and take a step forward? I think we can.”

Unfortunately, the Democrat controlled Senate doesn’t think we can.

Less than 4% of $5 billion in cancer research goes to childhood cancers.

Young Gabriella Miller became a warrior, against her own cancer and on behalf of other children, in her short time on earth. After learning from her parents she had a walnut-sized tumor in her brain that would most likely kill her Gabriella embraced activism — gathering 250,000 letters for Macy’s Make a Wish campaign last Christmas, and later giving speeches and making online videos that have gone viral.

Gabriella Miller speaks to a crowd about childhood cancer

Gabriella Miller speaks to a crowd about childhood cancer

From those viral videos are the following quotes made by Gabriella:

“It’s not fair that us kids get so little from the world, just because we’re smaller, just because we don’t know as much.”

“Sometimes at night, I’ll be with my mom and dad and I will be absolutely crying and I’ll be saying, ‘I don’t want to leave you. I want you to go first.”

“Once you get cancer, you kind of have to be all grown-up. You don’t really have a childhood.”

She made a list of things she wanted her parents to do after she passed away, including going to the haunted mansion at Disney World, and always saving her a piece of birthday cake. Six weeks ago, on October 27, Gabriella Miller lost her 11-month battle with cancer. Just a year prior she was a healthy, happy young girl with her entire life ahead of her – and even though she was brutally robbed of that life – she freely gave the last few months of it to advocate for this legislation. Prior to her death, Gabriella Miller spoke of the future and what she hoped would happen in her absence:

“If I lose my battle, then I want other people to carry on the war, and we’re going to win this war. I’ll be in a good place, and it won’t be all that bad.”

Democratic leaders pressed their members in Congress to vote against the legislation, and a majority of the House Democrats opposed it. Some democrats said the Bill was a publicity stunt or a fraud but after the House vote, Mark Miller – Gabriella’s father, said, “We took into consideration that it may be a publicity stunt to use Gabriella’s name. But they’re talking about it. They’re talking about the lack of funding for pediatric disease research, pediatric cancer research and brain cancer research like Gabriella had. So as long as they’re talking about it, we felt comfortable letting them use Gabriella to help build support and momentum for it.”

Harry Reid

Senate Majority Leader Harry Reid(D)

But even so, leaders of the Democrat-controlled Senate currently have no plans to bring the bill to a vote or even consider it. After fighting like ravenous animals – willing to let our country fall into financial default – to get funding for the Affordable Care Act passed through both chambers – the very same Senate won’t hear of diverting funds from a worthless cause no one cares about to a worthwhile cause most American taxpayers would feel pride in sponsoring.

Where’s the media scrutiny which would be afforded Congress if this was a pet issue of U.S. President Barack Obama?  As President Obama said repeatedly during the government shutdown “all they have to do is allow the vote to take place,” referring to House Speaker John Boehner’s reluctance to defy the Hastert Rule.

But Boehner caved and allowed the vote and he did it because the media spun all the blame for the shutdown on congress and none on the Senate or the President. Will that very same media use an even handed approach and afford the Senate the same scrutiny and treatment over this Bill which would benefit children fighting cancer? I wouldn’t hold my breath.

Where’s the vote, Senate Majority Leader Harry Reid? Where’s the scrutiny, lapdog media?

The only way to make this Bill a reality is for this story to be pushed until all Americans are aware of it and of this situation. In this circumstance YOU, the reader – the compassionate taxpayer – become the media. You know what to do – share, talk and spread the word. Share the links and info you found here and after that please contact your state’s Senators and let them know you’re aware of this Bill and you expect the Senate to consider it’s merits and pass H.R. 2019: The Kids First Research Act of 2013.


Bill Status: (at the time of this writing the Bill status had not been updated by govtrack to reflect that it passed the House but the Bill’s passage is confirmed)

 


Gabriella-Miller From the day Gabriella Miller’s cancer made it’s existence known to the day she passed away – was 11 short months. Are any of us so safe and so secure in our lives and those of our own children that we can afford to remain silent? Click this link to land directly on the United States Senate contact info page – complete with mailing addresses, phone numbers and website links to your own Senators.