Patrick Leavey, M.D., associate medical director for clinical affairs for the Pauline Allen Gill Center for Cancer and Blood Disorders at Children’s and associate professor of Pediatrics at UT Southwestern Medical Center spoke at the fourth Annual Childhood Cancer Summit on Sept. 19, 2013, in Washington, D.C.
This prestigious event was hosted by the Congressional Childhood Cancer Caucus and included an esteemed panel of thought leaders in childhood cancer care from cancer centers and hospitals in the U.S. and the National Cancer Institute.
While in Washington, Dr. Leavey had the opportunity to take his message to Capitol Hill to visit offices of key leaders for face-to-face meetings. Below is a blog post based on his presentation.
Just last weekend, I spent two nights with a group of 45 teenagers who are receiving chemotherapy for their cancer or have just completed therapy. It was a teen retreat at Camp John Marc, a camp facility 40 miles from Cleburne, Texas.
Every year, it continues to be a humbling yet thrilling experience for me to see my patients in a camp setting being children; to see previous patients being counselors to younger peers – to see survivors!
Max Erhmann in his poem Desiderata wrote in 1927, “You are a child of the universe, no less than the trees and the stars, you have a right to be here.” Our patients appear to live this right.
Success brings toxicity
The unparalleled success in outcomes for childhood cancer, where in only 40 years the survival has gone from 10% to 75%, make it clear that survivors of childhood cancer are at risk for long-term toxicity secondary to their cancer and its therapy.
Observations by the Children’s Cancer Survivor Study Group and others demonstrate that 60% of survivors have at least one long-term toxicity while 25% of survivors have a significant, potentially life-threatening late effect, specifically related to their cancer treatment.
The demonstration of increased incidence of stroke in survivors of leukemia, secondary brain tumors and metabolic syndrome in survivors of childhood brain tumor and cranial radiation are but a few examples of observations made in Dallas and elsewhere.
They serve to highlight the major risks for children surviving cancer: heart failure, lung and kidney injuries, growth delay, infertility, learning disabilities, psychological trauma and secondary cancers are perhaps the more concerning and serious.
Shift to adult survivors
At Children’s Medical Center Dallas, we instituted the first pediatric cancer survivor program in Texas in 1989, called the After the Cancer Experience (ACE) program. Shortly thereafter we developed a young adult program to help with the transition of care young adults experience when shifting from pediatric care to adult health care.
At UT Southwestern and Children’s, we are harnessing the National Academy of Sciences’ recognized expertise in cardiac muscle development with the ACE program clinical resources in attempts to develop novel predictive measures for patients with heart dysfunction. Such research is a small example of similar projects being carried out at multiple institutions that are critically dependent on research funds threatened by budget cuts but enhanced and secured by thoughtful and insightful legislation initiatives such as the Childhood Cancer Survivors Quality of Life Act introduced by U.S. representatives Jackie Speier and Michael McCaul and supported by the Pediatric Cancer Caucus. Children’s Medical Center is pleased to lend our support to such legislative initiatives.
The survivors of childhood cancer live with the morbidities of the treatment we give them and are a continued reminder to the pediatric oncology community, of which this caucus is a member, of our obligation to refine treatments, and to provide clarity in predication and quality in care for complications.
It is critical that we improve access for childhood cancer survivors to appropriate resources and delivery systems through health insurance reforms and support of safety-net programs — and we must pay special heed to the disparities that exist within minority or other medically under-served communities.
We must also enhance our investment in research into the diagnosis and treatment of pediatric disease — both here in Washington, D.C., and in the private sector — and speed those developments from the scientific bench to patients’ bedsides.
Unfortunately, the across the board cuts that pediatric cancer funding programs have sustained in recent years threatens to undo the advances we have made and the promise we have unlocked.
As our policymakers set the nation’s priorities and develop the federal budget, we encourage them to address the needs of childhood cancer patients and survivors, which include access to high-quality care and a continued investment in potentially life-saving research.