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11
Letter from the Dean

Leslie Williamson
PHILIP A. PIZZO, MD

It is sometimes easy to forget how many individuals are survivors of life-threatening diseases incurred years, or even decades, earlier. This is particularly true for some of the most serious childhood diseases.

When I began my training in pediatrics in the 1970s, most children diagnosed with cancer did not survive. It was rare for children with cystic fibrosis to live beyond their teenage years. Many children with congenital anomalies — especially cardiac defects — were at risk for early mortality. And when HIV/AIDS came on the scene in the early 1980s, early death was the rule. And the list goes on.

Today, the vast majority of children diagnosed with cancer are cured. It is now common for children with cystic fibrosis to live into adulthood, and HIV has become a chronic disease in children and adolescents — just as it has for adults. These successes are the result of basic and clinical science investigation and are exemplars of our translational efforts to turn research into practical health-care advances. I have witnessed these changes personally: Many of the children and adolescents I treated for cancer and AIDS are still living, decades since their diagnosis.

But while this is great news, it has come with a number of price tags. Seemingly curative treatments for catastrophic diseases have sometimes resulted in serious complications later in life. More than 60 percent of childhood cancer survivors have one or more such complication, including cardiac and central nervous system abnormalities. For a number of long-term survivors, these complications rival the primary disease — and they unfold in a slow, inexorable manner. In addition, the years of treatment and uncertainty about the outcome take a huge toll on children and families, leaving psychological and behavioral problems in their wake.

The long-term complications associated with survivorship pose another challenge. As children with pediatric disorders become adults, the expertise to care for them is often limited, making it all too easy for them to become orphans of the medical system. To date, most graduate medical education programs and medical centers have been deficient in considering the care and management of long-term survivors or developing the workforce to care for them. As their numbers grow, they will join the burgeoning ranks of individuals with chronic diseases, and increase health-care costs accordingly. It is thus imperative for academic centers to focus on long-term survivors as an important feature of medical education, research and chronic-care management — including new and improved delivery systems.

Along with seniors, the numbers of patients who are long-term survivors and who need chronic-care manage-ment will continue to grow in the years ahead, and thus demand the attention of the leaders in academic medicine.

Sincerely,
Philip A. Pizzo, MD
Dean
Stanford University School of Medicine
Carl and Elizabeth Naumann Professor, Pediatrics, Microbiology and Immunology

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