The ChallengeThe Scope of the Challenge
About one in 300 boys and one in 333 girls will develop cancer before the age of 20. Although uncommon, cancer is the second leading cause of death due to disease in children, exceeded only by accidents.
On average, 20 new pediatric cancer diagnoses occur per year in Northeast Wisconsin and the Upper Peninsula of Michigan. Since the mid-1950s, cooperative research has improved the survival rates for pediatric cancer from less than 10% to almost 80% overall. This success is attributed to active participation in clinical trials (well over 50% of children are on clinical trials compared to 3-5% of adults). These clinical trials provide state of the art medical treatment to children. Sadly however, even with all of these successes childhood cancer is still the leading cause of childhood death by disease with in the United States (National Childhood Cancer Foundation, 2004).
The diagnoses of cancer or bone marrow failure causes emotional, physical, spiritual and financial stresses on children and families. It is estimated that out-of-pocket medical expenses range from $1,000 to $30,000 per child per year (Families of Children with Cancer survey, 2003). In addition, there is the added financial challenge of missed work, expenses for traveling and lodging when care must be provided away from home, and child care for siblings when parents must be away.
The Challenge in Real Life
Sarah, an 18 month old, is receiving intense chemotherapy. The drugs she is receiving to help her are excreted in her urine and stool posing a possible health risk to her care givers and parents. To protect her caregivers and parents from this exposure, they must wear special disposable gloves when changing her diapers. The cost of these gloves for care at home is not covered by insurance. Sarah will remain on her chemotherapy protocol for the next 8 months. Her young parents were struggling to make ends meet before Sarah's cancer was diagnosed. This is even more of a challenge given that Sarah's mom has chosen to take an extended leave from her job to be with Sarah during her treatment.
Jose, a 17 year old, has been prescribed over the counter medications to help prevent stomach irritation and mouth sores which are side effects of his treatment for a bone marrow failure disorder. These medications are expensive and not covered by insurance. Jose's parents have six children at home including Jose. While they previously have been able to provide the basic needs for their family including health insurance, the unplanned and uncovered medical bills from Jose's treatment pose a big challenge to the family's budget.
Josh was diagnosed with cancer at 10 years of age. He has completed two separate phases of therapy but his cancer keeps coming back. After the cancer came back the third time, the only clinical trial that Josh could participate in was offered at a large institution out of state. (Due to the experimental nature of the clinical trial only a handful of institution offer this pilot study.) Josh's parents had been able to keep financial demands in check and their local family was a huge source of support. Traveling out of state for intense therapy would be very challenging both financially and socially. While they realize that the pilot study may not directly help Josh it could help future children who are faced with his disease.
With your help The Angel Fund can assist with all of these challenging situations by offering the financial and emotional/social support needed.