Washington, DC — Today, Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0. The legislation would provide a new source of funding for the National Institutes of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program (Kids First) by redirecting penalties collected from pharmaceutical, cosmetic, supplement, and medical device companies that break the law. Representatives Tom Cole (R-OK), Peter Welch (D-VT), and Gus Bilirakis (R-FL) joined Wexton in introducing the legislation.
The bill is named in honor of Gabriella Miller, a Virginia-10 resident who was diagnosed with an inoperable brain tumor and passed away in 2013 at age 10. It is Wexton’s first bill introduced in the 117th Congress.
“Tens of thousands of children in Virginia and across the country are depending on the development of new treatments and cures, yet funding remains at a historic low. This bill will give scientists and researchers greater resources in the fight against childhood cancer and rare diseases,” said Congresswoman Jennifer Wexton. “I went into public service to better the lives of my constituents, and it’s an honor to work with Ellyn Miller to ensure no other family goes through what her family did. I’m proud to carry this legislation in Gabriella’s honor, whose passionate advocacy changed the lives of countless other young children battling these illnesses.”
“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 ‘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.”
“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 existing monetary penalties levied against pharmaceutical, dietary supplements and cosmetics 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.
The Gabriella Miller Kids First Act was signed into law in 2014, establishing the Ten-Year Pediatric Research Initiative Fund and authorizing $12.6 million in annual funds for childhood disease research through Fiscal Year 2023. Since the original law was enacted, Kids First has made progress towards understanding childhood cancer and disease, such as initiating the Gabriella Miller Kids First Data Resource Center—a comprehensive data resource for research and patient communities meant to advance discoveries. Wexton’s legislation provides a new source of funding for the program which is expected to be exponentially larger and without an end date.
The bill introduced today would redirect penalties levied against pharmaceutical, cosmetic, supplement, and medical device companies by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA) towards the Kids First program. In recent years, hundreds of millions of dollars in penalties have been levied against these companies, and the Gabriella Miller Kids First Research Act 2.0 will help channel those funds directly to critical medical research focused on children.
In 2021, it is estimated that 10,500 children in the U.S. under the age of 15 will be diagnosed with cancer. Cancer is the number one cause of disease-related death in children age 14 and younger in the U.S. 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 the cancer is successfully cured. Yet, only 4% of the government’s funding for cancer research is specifically directed towards the development of treatments and cures for childhood cancer and other rare diseases.
On Tuesday, Congresswoman Wexton hosted a roundtable with doctors, public health officials, and advocates, including Virginia-10 constituents. The panel shared their own experiences of the importance and impact of the Kids First Research Program, as well as the need to continue funding. You can watch the full roundtable here.
Congresswoman Wexton worked closely with Ellyn Miller, a Virginia-10 constituent and Gabriella’s mother, to introduce the Gabriella Miller Kids First Research Act 2.0. Ellyn and her husband, Mark, founded Smashing Walnuts in 2013 to advocate and raise awareness about childhood cancer.
The full text of the bill can be found here.
Lend Your Support Now!
Your support is essential now to build upon the successful work that has already been done and to expand and enhance our research and data collection capabilities in the future. Please read the Letter of Support for H.R. 623 – Kids First Research Act 2.0 and help show our legislators the importance of this funding source by signing up here.