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Why It's Important
In the past twenty years, we have seen wonderful advancements in the diagnosis of childhood cancer and its treatment. Yet worldwide, too many children continue to lose their lives every year to cancer. We dream of a day when childhood cancer can be prevented, and gentler treatments cure every child diagnosed. And as therapies continue to improve, our childhood cancer survivorship population grows.
Children deserve a true cure, free from side effects. The definition of "cure" must transition from "not dying" to "living a life of quality." The sad reality is the world is not yet ready to support our survivors as they deserve. Survivors continue to require annual evaluations, medical attention, management for chronic issues, additional surgeries, and sometimes even treatment for secondary cancers. They struggle with hearing/vision loss, limb loss, reduction of organ function, infertility, stunted growth, cognative impairment, learning disorders, and executive dysfunction. Symptom management and reduction is inadequate. This is unacceptable.
All children - regardless of race, where they live, or financial status - deserve to break free from medical intervention and a life of pain and struggle. They deserve to be able to run and play with their friends, attend school, and dream of careers and/or raising a family, and then live those dreams.
PREP4Gold focuses on four key areas to improve the quality of life for our children.
Childhood Cancer Facts
Cancer - the #1 disease killer of our children - is now responsible for more than half of all childhood and teenage deaths.
National Vital Statistics Report, vol 68, 2019, Centers For Disease Control
About 1 in 285 children will develop cancer before the age of 20.
46 children per day or 16,850 children per year are expected to be diagnosed in 2020 with cancer (11,050 ages 0 to 14, and 5,800 ages 15 to 19)
American Cancer Society, CA: A Cancer Journal for Clinicians, 08 January 2020
From 1975 to 2017, leukemia incidence rates increased by roughly 34%, and incidence rates of brain and other central nervous system cancers increased 40%. These increases are too rapid to be due to genetic change.
Childhood Cancer: Cross-Sector Strategies for Prevention, 2020
[Racial and ethnic] disparities likely result from several factors, including differences in clinical trial enrollment, adherence to therapy, disease biological characteristics, and pharmacogenetics,” the authors wrote. “Beyond these factors, there is strong evidence that socioeconomic status mediates the association between race/ethnicity and childhood and adolescent cancer survival."
Racial and Ethnic Disparities in Childhood and Adolescent Cancer Survival, CancerNetwork, Home of the journal Oncology, March 2021
Cancer in children and young adults is different from cancer that develops later in life. Some of the unwanted side effects of cancer treatments cause more harm to children than they do to adults. This is because children’s bodies are still growing and developing, so cancer and its treatment are more likely to affect developing organs.
National Cancer Institute, Pediatric Supportive Care (PDQ®)–Patient Version
Childhood cancer survivors are at a 15-fold increased risk of developing congestive heart failure and are at a 7-fold higher risk of premature death due to cardiac causes, when compared with the general population.
Recommendations for Cardiomyopathy Surveillance for Survivors of Childhood Cancer: A Report from the International Late Effects of Childhood Cancer Guideline Harmonization Group, Lancet Oncol. 2015 Mar
Those that survive the five years have an eight times greater mortality rate due to the increased risk of liver and heart disease and increased risk for reoccurrence of the original cancer or of a secondary cancer.
Journal of the National Cancer Institute: “Cause-Specific Late Mortality Among 5 Year Survivors” National Cancer Institute, 2008 Oct
More than 95% of childhood cancer survivors will have a significant health related issue by the time they are 45 years of age; these health related issues are side-effects of either the cancer or more commonly, the result of its treatment. 1/3 will suffer severe and chronic side effects; 1/3rd will suffer moderate to severe health problems; and 1/3rd will suffer slight to moderate side effects.
St. Jude Children’s Research Hospital, Clinical Ascertainment of Health Outcomes Among Adults Treated for Childhood Cancer, JAMA. June 12, 2013
In 2018, the average medical cost and lost parental wages associated with the diagnosis of one child withhood cancer in 2018 was $833,000. (for one child for medical costs and lost parental wages.)
The National Children’s Cancer Society, The Economic Impact of Childhood Cancer, November 30, 2018
Results suggest that it may not only be the burden of caring for the child with cancer, but also the associated financial difficulties that contribute to a higher likelihood of psychological distress, including depressive symptoms in parents.
Parental Depressive Symptoms and Childhood Cancer: The Importance of Financial Difficulties
Creswell PD, Support Care Cancer, 2014
Distress may be impairing for vulnerable parents and may impact a child's coping and adjustment. Moderate quality evidence and expert consensus informed a strong recommendation for parents and caregivers to receive early and ongoing assessment of their mental health needs with access to appropriate interventions facilitated to optimize parent, child, and family well being.
Pediatric Blood and Cancer, Standards of Psychosocial Care for Parents of Children With Cancer, 23 December 2015
**For More Information and Statistics, review the Coalition Against Childhood Cancer (CAC2) Fact Library and the Childhood Cancer Cross Sector Strategies for Prevention, 2020
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