March, National Cerebral Palsy Awareness Day came and went as it commonly does, relatively unnoticed by anyone whose lives are not directly affected by it.
For those who may not know, cerebral palsy is an umbrella term referring to a (currently) incurable, non-progressive set of neurological conditions that produce physical and neurological abnormalities during human development. Cerebral palsy is caused by brain damage, either through injury or irregular development during the early stages of life. The damage usually occurs just before, during or shortly after the birthing process. Very few infants are born with detectalbe symptoms. Most will begin exhibiting them over the first few years of life as the child misses developmental milestones.
CP can disrupt a person's ability to walk, talk, stand, sit, swallow or perform other simple movements that healthy people take for granted. Exactly how and to what severity a person is affected can vary. Some patients suffer only minor difficulty with balance and fine motor skills, while others are literally trapped in their own bodies with painfully rigid, useless limbs, unable to speak or swallow.
Cerebral palsy affects more children than multiple sclerosis, cystic fibrosis, spina bifida, hemophilia, fetal alcohol syndrome, muscular dystrophy or childhood leukemia, however, research into the cause and cure of CP receives only a very small fraction of government funding compared to these other disorders. These other disorders deserve every penny of research funding they get, but that doesn't explain why CP warrants such low consideration. It's certainly not because it's a rare disorder.
One in every 303 US children have cerebral palsy. In the African-American community that number is one in every 270. Shockingly, in 80 percent of CP cases, the exact cause is never accurately determined. Even more shocking, is the fact that the legal community is responsible for determining the specific cause of individual CP cases more often than the medical or scientific community.
And it's not because CP doesn't cost US taxpayers millions upon millions of dollars in healthcare expenses.
The average lifetime "additional direct cost" for a single person with cerebral palsy is estimated at over $1.5 million above and beyond the comparable cost of living for the average, healthy American. Federal and state governments, in the form of Medicaid and other tax-funded social services absorb the lion's share of these expenses. Back in 2000, it was estimated that the total lifetime medical and care expenses by all US citizens currently living with CP would total more than $13.5 billion. Those numbers have risen since then.
Additionally, 75 percent of people with cerebral palsy have at least one additional developmental impairment such as blindness or vision impairment, deafness or hearing impairment, autism, arthritis, epilepsy and other intellectual disabilities that are direct result of the CP.
Currently, the US Center for Disease Control (CDC) has no funding appropriated for CP research. The National Institute of Health (NIH) provides some funding, but not for innovative, curative research.
If you know even one family that deals with severe cerebral palsy, then you shouldn't require any further convincing about the compassionate nature regarding a need for federally funded research. If you don't, then the costs to you and other American citizens should be enough to get your attention.
In this time of budget sequestration, repeated natural disasters, debt and economy woes, it may not seem like the most opportune time to lobby the US government for money targeted specifically for CP research, but that couldn't be more wrong. Don't just take my word for it. Do your own research. A federal funding commitment for the cure, prevention and causation of cerebral palsy will allow scientists to develop effective s
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