Naturally, Max, who less than two years earlier had scored in the 99th percentile in a kindergarten entrance aptitude test, began to detest reading. He recognized the growing gap between him and his peers, and as happens with many students who fall behind, Max started to feel self-conscious.
David and his wife Annemarie brought Max to a neuropsychologist who evaluated Max’s condition. The test, which cost thousands of dollars, was originally conducted to see whether Max suffered from chemo brain, a term which describes changes in the brain caused by chemotherapy.
The day before his fourth birthday Max had been diagnosed with a rare B-cell Lymphoma in 2007, which was stage four and never before seen by Memorial Sloan Kettering Cancer Center. Max fought the disease for over two years. While he and his family are grateful for Max’s recovery, his remission is tempered by a lifetime of unknown side-effects from both the disease and the treatment.
This is the bittersweet reality for three out of every five children who survive childhood cancer but experience long-term effects, some of which are life-threatening. Pediatric cancer still takes the lives of too many kids, and remains the leading killer of children by disease. While we are thankful for the significant advances in treatments for some childhood cancers, we have much more to learn before all diagnosed children will have the ability to live full and happy lives.
The main obstacle is funding. Hundreds of billions of dollars are spent each year on cancer treatment and research, but studies and drug development specific to pediatric cancers remain woefully underfunded. Unfortunately, new drugs and treatments are few and far between, largely because private companies lack the ability to generate significant profit from them. Drug companies have also been reluctant to develop products specifically for childhood cancer patients, in part because of the liability risk that they take when testing drugs on young children.
Private organizations, such as The Max Cure Foundation founded by Max’s family, have successfully raised money for a variety of childhood cancer programs. Yet the federal government has made only very modest investments in research through the National Cancer Institute (NCI). For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents. To us, and the families of the 35 children diagnosed with cancer each day, it is clear that much more needs to be done to ensure access to treatment and the opportunity to fully recover.
That is why the bipartisan Congressional Pediatric Cancer Caucus, which we founded last year, is convening a Childhood Cancer Summit in Washington on September 16th. In observance of September designated as Childhood Cancer Awareness Month, top doctors and researchers from across the country representing institutions such as Memorial Sloan Kettering in New York, M.D. Anderson in Houston and Children’s Hospital of Philadelphia, will join with lawmakers on Capitol Hill to bring attention to the challenges we face and ideas to solve them. We will discuss how we can overcome the obstacles to drug development and access to treatments, and how we can ensure a better quality of life for those who survive their fight with pediatric cancer.
The Summit is critical in raising the level of awareness, not just among the general public, but also among policymakers. Our goal is to fashion the recommendations from our experts into a legislative agenda and gain the support of our colleagues in the House and Senate. Members of Congress need to understand the importance of a rededication to pediatric cancer research and should recognize that the needs of families and children who confront this disease are often vastly different than those associated with other forms of cancer.
The future of Max and hundreds of thousands more of America’s children living with cancer depends on action from both the public and private sectors. We hope that our Summit and sustained focus on this issue will help to eliminate childhood cancer and provide more of our nation’s youth with the opportunity to reach their full potential.
Congressmen Michael McCaul (R-TX) and Joe Sestak (D-NY) are founders and co-chairs of the Congressional Pediatric Cancer Caucus.