Approximately 5 million American children and adolescents suffer from one or more developmental disabilities. These children represent the most tragically affected among the over 14 million young Americans who have struggled with one of a broad spectrum of debilitating and incurable neurological disorders at some time in their life. The most widely-known among these debilitating conditions are cerebral palsy, autism, Down syndrome, epilepsy, Tay-Sachs disease, Rett syndrome, leukodystrophy, shaken baby syndrome, Canavan’s disease, adrenoleukodystrophy, hydrocephalus, pediatric stroke and pediatric brain tumors. Vision impairments and hearing loss also contribute to this list.
Each of these disorders results in significant developmental impairments in affected individuals, including impairments in cognition, speech, self-care and physical health that persist throughout life. These chronic conditions make common life tasks difficult to achieve for affected children, necessitating substantial long-term, supportive care.
Families affected by developmental disabilities struggle with the chilling reality that medical science currently does not understand the underlying causes of many of these devastating conditions. Treatments of these diseases are limited, and there are no known cures.
Human and Social Costs
The care and treatment of the estimated 630,000 California children who suffer from a developmental disability renders a substantial toll on their loved ones, our schools and state government.
In 2004-2005, California’s Developmental Disability Service will spend a projected $3.4 billion to support developmentally disabled children and adults. This investment is likely to rise in coming years, as the average cost per disabled Californian (including support from all sources) has steadily increased from $9500 to $13, 400 between 1998 and 2003. Special education consumes a large portion of the budget of California’s education system, where 11% of its students qualify for special education instruction.
Including all payers, cerebral palsy and Down syndrome are particularly costly, with lifetime costs per new case reaching (in 1992 dollars) $503,000 and $451,000, respectively. In total, estimated lifetime costs (in 2003 dollars) for disabled individuals requiring long-term care is expected to top $67 billion in the United States. More striking is the tragic burden brought to bear on these children and their families. The lives of parents, grandparents and siblings are forever changed as they help these young children struggle to attain a life that may never be “normal.” Developmentally disabled children require 1.5 times more doctor visits, 3.5 times more hospital days, twice the number of school days lost and a 2.5-fold increase in the likelihood of repeating a grade in school than non-disabled children. Each affected child creates a domino effect of costs - special education, specialized care, adaptive living requirements - that compounds the sorrow of seeing their loved one live a life of limited options.
The Potential for Stem Cell Cures and Therapies
Medical researchers believe that new, stem cell-based explorations into the causes underlying developmental disabilities will improve the lives of these children much in the same way stem cells may benefit adults suffering from neurological disorders like Alzheimer’s and Parkinson’s.
Stem cells may give medical researchers the ability to repair or replace nerve fibers damaged by some of these diseases (cerebral palsy), or provide a vehicle for the replacement of essential enzymes missing in patients (Tay-Sachs, Canavan’s, leukodystrophies). Stem cells also hold tremendous potential to enable unique investigations of these diseases’ underlying causes, and may lead to the development of more effective drugs for the treatment of cerebral palsy, autism, Rett syndrome, epilepsy and other neurological disorders.
Recent evidence of stem cells’ ability to seek out or “home” to diseased tissue suggests that these cells may improve treatment of childhood stroke and cancer. By first designing these cells to secrete anti-tumor or anti-inflammatory drugs, then placing them near diseased tissue, stem cells may be used to send potent disease-fighting drugs right where they are needed most. This kind of therapeutic strategy would revolutionize stroke and cancer treatment.
That’s why many people who have family members suffering from developmental disabilities and groups like Children’s Neurobiological Solutions Foundation, the Late-Onset Tay-Sachs Foundation and Cure Autism Now Foundation strongly support stem cell research - and have endorsed Proposition 71, the California Stem Cell Research and Cures Initiative.
Partial list of sources:
Children’s Neurobiological Solutions Foundation
Cure Autism Now Foundation
Late Onset Tay-Sachs Foundation
Canavan Research Illinois
United Leukodystrophy Foundation
National Tay-Sachs & Allied Diseases Association, Inc.
EdSource Online: School Finance Overview
Centers for Disease Control, Economic Costs Associated with Mental
Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment -
United States, 2003.
California State Council on Developmental Disabilities
California Legislative Analyst’s Office; Analysis of 2004-05
Budget Bill; Department of Developmental Services (4300)
Centers for Disease Control, Economic Costs of Birth Defects and
Cerebral Palsy - United States, 1992
Prevalence and Health Impact of Developmental Disabilities in US
Children. Boyle, Decoufle and Yeargin-Allsopp. Pediatrics
- http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt= Abstract&list_uids=7509480