Forty or fifty years ago, the survival rate for childhood cancer was around 20 to 30%. Today the cure rate is approaching 80%. It is estimated that there are over 350,000 childhood cancers survivors today in the United States and that by 2010, one of every 250 young adults will be a cancer survivor. What we are in fact experiencing is the first generation of childhood cancer survivors.

Long after their treatment has ended, survivors of childhood cancer continue to face serious health, developmental, emotional, educational, psychological, career, and financial challenges resulting from their illness and the drugs used to cure them. As many as 65% of survivors may incur some form of toxicity, commonly known as “late effects.” Because this is a new medical phenomenon, “regular” doctors don’t know what to look for when a patient says, “I’m a survivor of childhood cancer.”

Thanks to a newly formed collaboration, former and current patients of The Valerie Fund now have favored access to the cutting edge LITE (Long-term, Information, Treatment effects, and Evaluation) Program of The Cancer Institute of New Jersey (CINJ), the state’s first and only National Cancer Institute-designated Comprehensive Cancer Center. The Valerie Fund is underwriting $500,000 of the cost of the program over a three-year period, doubling the number of patients the program can serve to a total of 400. To participate in the LITE Program, patients generally must be off treatment for two years (although this threshold may vary according to the type of cancer) and cancer-free.

The Program, based on a model used at over 70 hospitals in 26 states, allows us to provide a complete continuum of care for our survivors. Participants are examined and followed by physicians, nutritionists, and social workers who specialize in late effects oncology to identify physical, emotional, and developmental concerns. They may also be referred to outside providers such as occupational therapists. As patients move through the program, practitioners will record, track, and analyze resulting data that will help improve late effects treatments for subsequent patients.

One of the program’s most essential and unique features is its educational component, which gives survivors the knowledge and tools to self-advocate, a skill they will need often throughout their lives. Under the guidance of a nurse practitioner, patients receive instruction in areas such as scholarships, covering the insurance gap, identifying long-term physical and emotional effects related to cancer and treatment, and transitioning to adult care. The goal is to provide childhood cancer survivors with the best possible quality of life.

Located directly across from the New Brunswick train station, The Valerie Fund/CINJ LITE facility is easily accessible by public transportation and less than one hour travel time from any of The Valerie Fund Centers throughout New Jersey.

If you could like to learn about specific funding opportunities for this program, please contact Lori Abrams at (973) 761-0422 or LAbrams@TheValerieFund.org.