NCI Director Ned Sharples Addresses the STAR Act, Now Fully Funded

 

News From Congressman Michael McCaul, Co-Chairman and Founder of the Congressional Caucus for Childhood Cancer:

Dear Friends,

Last week, I hosted the 9th Annual Childhood Cancer Summit at the U.S. Capitol Visitors Center. At the summit, we celebrate our accomplishments while reinvigorating our drive to eradicate the number one killer of our children. We have come a long way and have a lot of good stories to tell since I started the Congressional Childhood Cancer Caucus about 10 years ago.  I am proud of the work we have done, the bills we have passed, and none of this could be possible without all of our wonderful advocates. We were honored to have the National Cancer Institute (NCI) Director with us to talk about the STAR Act and their work on pediatric cancer.

During the event, we found out terrific news. The Childhood Cancer STAR Act is going to be fully funded this year. This critical legislation will allow us to better combat the four main issues of childhood cancer: Survivorship, Treatment, Access, and Research.

Click here to watch the NCI Director Dr. Ned Sharpless’s remarks.

You can click here or on the image below to watch my opening remarks, and the other speakers.

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Our DIPG Advocacy Group was represented at the Summit by Janet Demeter, and these are her thoughts as taken from the Jack’s Angels Foundation Facebook page:

Still no word on mortality rates and years of life lost being considered on par with numbers and profits, so the squeaky wheel continues. As long as there are so few options for DIPG and pediatric brain cancer, the leading cause of death in kids with cancer, I fail to see the greatness. There was an erroneous assertion made by the Congressman himself, that Neuroblastoma has been cured. Quite by mistake and good fortune, a new drug was found that had been shelved by a pharmaceutical company which helps some children with neuroblastoma where nothing did before. This is not evidence of some enhanced concentration or funding for pediatric cancer research, although it is good fortune. However, at the summit was a young girl with neuroblastoma still in her body, fearful of relapse with no guarantees, asking the same thing I was asking…when will their lives matter as much as numbers and profits? Why can’t we prioritize children and the dying in some way, for research?

As always, crickets.  And it’s really 7% of the NCI budget now, not 4%.  And with another 5 billion to NIH, the 4% is much more.  Those are the answers, which are not answers.  I was, however, very encouraged by the new director’s willingness to engage in discussion.  This is a huge step forward.  But please, call your Congressman to support H.Res.69.  It’s the only bill to directly address this issue! bit.ly/hres69–info  (it’s on page 3 of this info package that went to all Members of Congress Sept. 2018)

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