Advancing the Most Comprehensive Childhood Cancer Bill
No matter your age, hearing the words ‘you have cancer’ from a doctor is frightening and life altering. But hearing those words directed towards your child or young friend is even more horrifying.
When I was in elementary school, I lived this scenario. My best friend was diagnosed with leukemia and sadly lost his life to the deadly disease.
That was 45 years ago. Then, childhood cancer was nearly a death sentence. Today, we have made tremendous progress – deaths have declined by almost 70 percent since my friend passed. But, the fact remains that cancer is still the number one cause of death for children in the United States.
These are children who should be focusing on playdates and birthday parties, not worrying about procedures and doctor visits. They most certainly should not have to worry about lobbying the federal government on ways to solve this issue. That is why when I entered Congress I knew I wanted to give these kids a voice in Congress, and hope to celebrate many birthday parties to come. I founded the Congressional Childhood Cancer Caucus to make this possible.
Throughout my tenure as co-chair of this caucus, we have watched two of our bills, the RACE Act and the Creating Hope Act, get signed into law. And just last month, I had the privilege of advancing the most comprehensive childhood cancer bill, the Childhood Cancer STAR Act, to the president’s desk for his signature.
This was an historic and very memorable day for the childhood cancer community, advocates, survivors, and patients.
While we have made significant strides in treating pediatric cancer, we have not paid nearly enough attention or put in enough resources to solve the problems of survivorship.
We need to make sure that we’re doing everything possible to treat cancer in our children, but also to look at the unique long-term health challenges that survivors face.
That is why the STAR Act authorizes the National Institutes of Health (NIH) to create a series of “best practices” to address the challenges of survivorship among pediatric cancer patients, and authorizes research into this area. Due to the forms of toxic treatment children with cancer receive – namely radiation and chemotherapy – the survivors often endure long-term lingering side effects. In fact, two-thirds of childhood cancer survivors face serious medical conditions for the rest of their lives.
We have also long overlooked the study of pediatric cancer, despite the fact that cancer kills more children beyond infancy than any other disease in this country.
The STAR Act strengthens the NIH research tools to study pediatric cancer. Now, for the first time, data and material on some of the rarest forms of childhood cancer will be available to researchers. We also set up a program at the Center of Disease Control (CDC) to identify and track incidences of childhood cancer and set up a national childhood cancer registry. This will help researchers spot trends and track cancer in a way that is currently unavailable. With this new law, I am encouraged that our efforts to combat childhood cancer are gaining strength. We are dependent on our doctors and researchers to wage war against cancer, and it’s our job in Congress to equip them with all of the tools and resources to do so efficiently and expediently. Being able to see my legislation have such a positive impact on children suffering across this country has been some of the most rewarding work in my life.
But, this type of legislative accomplishment would not be possible without all of the survivors and advocates who rallied support for this bill. I am so grateful for their efforts and look forward to working with these dedicated and passionate voices as we work to pass more legislation to better our children’s lives in the future.