Wexton Introduces the Bipartisan Gabriella Miller Kids First Research Act 2.0
The legislation would redirect penalties from pharmaceutical companies that break the law to pediatric disease research
Washington, April 17, 2020
Washington, DC -- Today, Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 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.
“With investment in research for childhood cancer and other rare pediatric diseases at a historic low, we are failing the tens of thousands of children across the country who are battling these illnesses,” said Congresswoman Jennifer Wexton. “We can do better for our kids. By redirecting the penalties from pharmaceutical companies that break the law, we can fund lifesaving medical research. I’m proud to introduce the bipartisan Gabriella Miller Kids First Research Act 2.0 to help carry on the fight against devastating childhood illnesses.”
“Establishing the Gabriella Miller Kids First Research Fund was an important step to 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.”
“I have long been a proponent of medical research especially for illnesses and diseases that affect our most vulnerable,” said Congressman Tom Cole. “The Gabriella Miller Kids First Research Act 2.0 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.”
“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 foundational 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 the 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.
Kids 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 and other rare diseases -- a historic low in the United States.
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 founder 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.