Congress should pass the STAR Act
Reading today’s headlines and hearing today’s news, it makes one feel like our government has never been more divided. But there is one act that could bring us all together — Republican and Democrat — in a true showing of bipartisan support. Right now, the Senate has passed and 362 members of the House of Representatives have voiced their support by co-sponsoring the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act which would expand research into childhood cancer.
This research is especially important to families like mine.
On the morning of April 21, our son, Drew, was not feeling well and went to a sick appointment at his pediatrician’s office. Upon seeing his complete blood count, his pediatrician sent him directly to the local children’s hospital. That afternoon, my husband and I heard four words no parent ever wants to hear, “Your son has cancer.”
Drew is an active and energetic kid who was always on the move, and he also happens to be extremely tall for his age. When he complained of pain in his legs, we attributed it to growing pains or long soccer games. When the pain shifted from his legs to his right arm and his left side of his jaw, we knew something else was going on. He went from running around the soccer field to having no energy, not being able to move his arm or open his mouth, and to being extremely gray in coloring.
Drew’s diagnosis with acute lymphoblastic leukemia kicked off a terrifying journey characterized by a constant back-and-forth between our home and the Palm Beach Children’s Hospital at St. Mary’s Medical Center. Drew endured an initial 9 months of intensive chemotherapy that is now followed by an additional 2½ years of maintenance chemotherapy. His immune system has weakened from the treatments, so we have to keep him out of school and away from his friends and extended family.
Every year, more than 15,000 children like Drew are diagnosed with cancer, and families like ours are faced with inadequate information, limited options, and agonizing decisions. The Childhood Cancer Survivorship, Treatment, Access, and Research Act was written to address these issues and help pediatric cancer patients and their families.
Today, we are grateful that Drew is in remission. For the next 2½ years, our goal will remain the same — keeping him in remission and providing him with as “normal” as a life as we can.
Even when treatment ends, Drew is far from out of the woods. Relatively little is known about the long-term impacts of the treatment that is currently saving his life. It is estimated that as many as two-thirds of pediatric cancer survivors will face additional health problems from secondary cancers to organ failure.
The STAR Act would increase available data by enabling cooperation between physicians. It would fund critical studies on the effects of treatment and other issues that will help young survivors take control of their health care as they age.
Passing this bill is vitally important for children and families who are fighting cancer. But, we need to do more than just pass this bill — we need it to be fully funded. This is an issue where all our elected officials can come together to take this common-sense step to help the youngest cancer patients and survivors as they strive to lead long, productive lives. MEGAN FOGG,