Kids First 2.0

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Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (HR 6556) which would redirect penalties collected from pharmaceutical companies that break the law to critical rare pediatric disease research. Representatives Tom Cole (R-OK-04), Peter Welch (D-VT-At Large) and Gus Bilirakis (R-FL-12) joined Wexton in introducing the legislation.

“We can do better for our kids,”

412834-200px“There’s an urgent need to fund more research for childhood cancer—We can do better for our kids,” Congresswoman Jennifer Wextonalso said,By redirecting the penalties from pharmaceutical companies that break the law, we can fund lifesaving medical research.  I am proud to be teaming up with Smashing Walnuts, Rep. Peter Welch, Congressman Tom Cole, and Rep. Gus Bilirakis to introduce the bipartisan Gabriella Miller Kids First Research Act 2.0 to help carry on the fight against devastating childhood illnesses.”

“Today, Congresswoman Wexton is DOING something wonderful for children who suffer from cancer and other debilitating diseases.

22815151_1551000391588773_7741191359098391037_n“My daughter Gabriella called upon our elected officials to “stop talking and start doing” two weeks before she died of brain cancer at the age of 10,” said Ellyn Miller, Founder and President of the Smashing Walnuts Foundation. “Today, Congresswoman Wexton is DOING something wonderful for children who suffer from cancer and other debilitating diseases.  Building off the great success of the first ‘Gabriella Miller Kids First Research Act’, Rep. Wexton’s bipartisan legislation brings additional funding for much needed research for childhood cancers and diseases. My heartfelt thanks to all the Members of Congress who have joined together to support the search for better treatments and cures for our children.”

We need your support!

SignUPclickWe need to get as many Childhood Cancer and Rare Diease organizations to help show support for this 2.0 version of the Gabriella Kids First Research Act.  We need to show other Representatives in Congress that there is a real need. To show that your organization supports this bill please click here: SUPPORT

“Establishing the Gabriella Miller Kids First Research Fund was an important step to412239-200px help children battle rare cancers,” said Congressman Peter Welch, an original cosponsor of the 2014 bill that first established the fund. “This new legislation will make sure that fines levied against Pharma’s bad actors will be put towards a good cause—researching cures to these terrible childhood cancers. I hope that Congress can once again put down the partisan battle axes to give children a better chance at beating these brutal diseases.

Fines levied against Pharma’s bad actors will be put towards a good cause.

400077-200px“I have long been a proponent of medical research especially for illnesses and diseases that affect our most vulnerable,” said Congressman Tom Cole. He was an original cosponsor on the Gabriella Miller Kids First Reserch Act in 2014.  I am proud to be cosponsoring “The Gabriella Miller Kids First Research Act 2.0 which would expand funding for childhood diseases by redirecting monetary penalties levied against pharmaceutical manufacturers toward valuable research. By doing this, we can hopefully uncover links between childhood cancer and birth defects and save the lives of children. I am proud to be a co-sponsor of this important piece of legislation.”

“Children have significantly fewer treatment options than adults.”

“Pediatric cancer remains the number one disease that leads to the death of American children. While survival rates have improved for some types of pediatric cancers, thousands of children are lost to cancer each year and many more encounter life threatening complications related to harsh chemotherapies. Children have significantly fewer treatment options than adults and oftentimes must rely on treatment regimens developed for adults because pediatric-specific treatments simply do not exist for many pediatric cancers and rare diseases. The Gabriella Miller Kids First Pediatric Research Program at the National Institutes of Health (NIH) is working to develop a large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders. This 412250-200pxfoundational research is critical for facilitating a better understanding of pediatric cancers, and holds the promise for the development of better treatments and possible cures. As a longtime advocate for children and rare disease patients, I am proud to join my colleagues in pushing for the continuation of this crucial research,” said Congressman Gus Bilirakis.

In 2014, Congress passed the Gabriella Miller Kids First Research Act which established 2014-04-05 12.14.13 pmthe Ten-Year Pediatric Research Initiative Fund and authorized $12.6 million in annual funds for childhood disease research, including important areas of emerging scientific opportunities, rising public health challenges, and knowledge gaps. Since it was enacted, the bill has provided $75 million to childhood cancer and disease research.

Wexton’s legislation provides a new source of funding for the Kids First Research Program, as funding will expire in Fiscal Year 2023. This new source of funding is expected to be exponentially larger and does not have an end date.

The Gabriella Miller Kids First Research Act 2.0 would redirect penalties levied against pharmaceutical manufacturers by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA) towards the Kids First Pediatric Research Program (Kids First) at the National Institutes of Health (NIH). There have been consistent and large civil sanctions leveraged against pharmaceutical companies since 2013 – hundreds of millions from six violations. With this legislation, penalties from pharmaceutical companies that break the law would be channeled directly to critical medical research.

GMKFAFatedGraphicKids First funds much-needed research on rare childhood cancer, birth defects, and other rare pediatric diseases. Currently, only 4% of the National Cancer Institute’s $4.9 billion budget goes towards development of cures and treatments for childhood cancer. Cancer is the single leading cause of death among American children of any disease, and approximately 16,000 kids are diagnosed with cancer each year in the United States However, in the past 30 years, only 4 drugs have been developed to treat cancer in children exclusively. Childhood cancers differ from those found in adults in that they do not stem from lifestyle or other common risk factors. Many children with cancer do not respond well to conventional treatments, which have resulted in long-term health and disability issues for patients, even if successful in curing the cancer.

Congresswoman Wexton worked closely with Ellyn Miller, a constituent and founder2014-09-03 05.15.42 am of Smashing Walnuts based in Leesburg, to introduce the Gabriella Miller Kids First Research Act 2.0. The foundation was established in 2013 after Ellyn and Mark’s daughter, Gabriella, was diagnosed with an inoperable brain tumor. Gabriella passed away in 2013 at age 10. She is the namesake for both the 2014 bill and the legislation introduced today by Congresswoman Wexton.

 

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This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink.

3 Responses to Kids First 2.0

  1. Annette says:

    Very well done Ellen, keep on going!!

  2. Pingback: The Gabriella Miller Kids First Research Act 2.0 – Children's Cancer Therapy Development Institute

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