Blissfully ignorant! That was us before our grandchild Declan was diagnosed with a childhood cancer called AT/RT. On diagnosis we were told that for Declan there was no hope — no cures, treatments, protocols. We were told this particular type of childhood cancer was deemed “rare” and there had been little to no research. Thus began our journey into the world of childhood cancer and subsequently recognizing the apathy on the part of those who make decisions about funding research.
For many childhood cancers not much has changed in decades. Research, reading, inquiry, everything seemed to say, that although billions of taxpayer dollars are provided to fund research programs, childhood cancer research is not even on the radar screen and certainly not a priority in the Federal budget. There have been various pieces of legislation related to childhood cancer, Congress appropriates billions of taxpayer dollars for research each year – but childhood cancer research does not get a fair share of those funds.
Childhood cancer is the #1 disease related killer of kids in the U.S., the incidence of childhood cancer in this country is rising; 1 in 285 children will be diagnosed with cancer before the age of 20; over two thirds of survivors suffer life-altering impacts of treatments; and, 95% of survivors will suffer severe health impacts before the age of 45. Let me say it again, the incidence of childhood cancer continues to rise in this country – we need research now! Despite gripping statistics, resources available and the fact that Americans proclaim our children to be our most valuable asset — childhood cancer research is not a priority and is vastly and consistently underfunded. Why?
In the 1950s almost all children who were diagnosed with cancer, like Robin Bush, were given a death sentence at diagnosis. Robin was the 3 year old daughter of former President George H.W. Bush and his wife Barbara. During an interview a few years ago, former first lady Barbara Bush recalled when Robin was diagnosed with leukemia in 1953. Mrs. Bush was told by the doctor’s, “she’s going to die.”
Today, thanks to research, childhood leukemia is no longer an absolute death sentence for kids. By the late 1980s, cure rates for pediatric acute lymphoblastic leukemia (ALL) climbed above 80%. Investment in research has changed the picture for childhood leukemia – still more to do but childhood cancer research has changed the diagnosis from a death sentence to a likely cure. According to a September 2013 report by the National Cancer Institute (NCI) leukemia/lymphomas account for about one-third of leading childhood cancers. There are 16 major types of pediatric cancers and over 100 subtypes.
CHILDREN’S HEALTH ACT OF 2000
The Children’s Health Act of 2000 was signed into law on October 17, 2000. The Act intended to focus on children’s health issues, authorized the formation of federal child health funding programs and included pediatric research initiatives. The legislation called on Health and Human Services (HHS) to provide services to children whose lives have been affected by diseases such as cancer.
The Children’s Health Act of 2000 contains statutory provisions related to childhood cancer —
- Title XI requires the Secretary of HHS acting through the NIH to study risk factors for childhood cancer and carry out projects to improve outcomes among children with childhood cancers and secondary conditions. Title XI states “Such projects shall be carried out by the Secretary directly and through awards of grants or contracts.”
- Title X creates the Pediatric Research Initiative requiring the Secretary to establish an “initiative” at NIH to conduct and support research that is directly related to diseases, disorders and other conditions in children. The “initiative” provides funds to enable the Director to increase support for pediatric biomedical research, to enhance collaborative efforts among the institute and increase “development of adequate pediatric clinical trials and pediatric use information to promote the safer and more effective use of prescription drugs in the pediatric population.”
- Section 1002 provides for “Investment in tomorrow’s Pediatric Researchers.” In order to ensure the future supply of researchers dedicated to the care and research needs of children, the Director of the Institute, shall support activities to provide an increase in the number and size of institutional training grants to support pediatric training an increase in the number of career development awards for professionals to support pediatric basic and clinical research.
A little overview on various organizations mentioned in this legislation. The Department of Health & Human Services (HHS) is a cabinet level agency with a mission to “enhance the health and well-being of Americans by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.” HHS notes that they administer more grant dollars than all other federal agencies combined.
The National Institute of Health (NIH) is one of the 11 agencies that make up the Department of HHS. The NIH is “the nation’s medical research agency – making important discoveries that improve health and save lives.” NIH is the largest source of funding for medical research in the world, creating hundreds of thousands of jobs in research institutions in every state and around the globe. NIH indicates they are responsive to Congressional legislations that adjusts NIH programs to meet changing research needs. The NIH homepage indicates that they encourage and depend on public involvement in federally supported research and activities. (So let them hear from you.) The Office of the Director, led today by Francis Collins, is the central office at NIH. The Office of the Director sets policy for programs and activities of all NIH components. The National Cancer Institute (NCI) is a component of NIH and they are a leader in the nation’s cancer research.
The Children’s Health Act was passed 15 years ago. During this time, the children wait. In 15 years we have lost more than 30,000 children to childhood cancer. While the children wait, tens of thousands of children receive treatments that often consist of down-sized adult protocols due to the lack of research and corresponding lack of pediatric protocols, treatments and cures.
The legislation requires that the Secretary “carryout projects to improve outcomes among children with childhood cancers and secondary conditions,” it requires NIH to support research directly related to disease, it requires NIH to invest in pediatric research to increase the number and size of pediatric training grants. Since childhood cancer is the #1 disease related killer of kids in the U.S. a “reasonable person” might assume that based on compelling facts and statutory legislation, childhood cancer research would be a PRIORITY for HHS, NIH and NCI. Of course there is a great lack of transparency in how they set priorities, outcomes, budgets, etc. For many of us dealing with childhood cancer and trying to get the facts, it does not appear that childhood cancer research is any kind of priority for HHS or its components. Any mention of childhood cancer is scarce in the myriad of budget documents prepared by the HHS, NIH and NCI. Childhood cancer is rarely mentioned if at all in testimony and hearings. Although there was rather cavalier discussion of childhood cancer research by the former NCI Director during past budget hearings — childhood cancer is rare, NCI has it covered, NCI could do more with more money, but basically it’s not a priority for them.
It appears that NIH deems it statistically acceptable that over 2,000 children a year die. How many children will it take, how long will children have to wait before childhood cancer research becomes a priority in the Federal budget?
Subsequent to passage of the Children’s Health Act, NIH launched the National Children’s Study (NCS). The study was funded by Congress for over a decade and intended to provide information on health and development of 100,000 children across the U.S. Part 2 discusses the NCS, the collapse of the study and the investment of $1.2 billion of taxpayer dollars.
Author: Donna Carroll Carmical
Want to help make childhood cancer a priority? Ask lawmakers who help determine the budget for the National Cancer Institute for more than 4% of the research budget is one way to show support.