The Cost Of Spastic Cerebral Palsy. One Patients Fight To Pay For A Wheelchair
As a follower of Chris Pirillo (LockerGnome Community) on Facebook I was shocked today when he started a Facebook post thread about a man with Spastic Cerebral Palsy who couldn’t afford a wheelchair (his medical insurance won’t cover the cost).
The patient Andrew Epperson started a GoFundMe page in the hopes of raising the incredible $10,000 cost for the manual wheelchair (yes you heard that right, $10,000 for a MANUAL chair).
We spoke with Andrew who told us that he has an electric wheelchair however that option does not allow for easy transporation throughout the Portland, Oregon area where his mother could easily transport him in her vehicle with the help of a manually folding wheelchair. Unfortunately a disability friendly taxi can take hours to arrive and while a 4 mile trip can cost $20 each way he must also pay $30 per hour in order to have a taxi wait rather than allowing hours for a new taxi to arrive in some cases.
Andrew says he use to take medical transport however he was “left on several occasions for upwards of 4 to 5 hours and after being forced to hold in his urine” which in turn forced him onto antibiotics.
As Andrew quips:
“Ironically the medical insurance company will pay for the antibiotics every time but not for the chair that would solve the problem.”
In a post on his funding page Andrew wrote:
I know at first glance the amount im asking for can seem like a bit of a shocker but the base cost of my chair according to a representative at care medical just for the body is $4,000 this amount does not include hourly billing for labor and parts some examples include a seat belt a harness straps for my feet to stop me from kicking during spasms a headrest, Laterals (they help hold me up straight) a ROHO wheelchair seat which protects a bed sore I got during a surgery from breaking back open.
Because Andrew suffers from an ailing spinal cord and other issues brought on from his Cerebral Palsy the costs for a specialized wheelchair created just for his needs have skyrocketed far beyond the typical cost of a cerebral palsy equipped chair which typically costs far less to procure.
Andrew was forced out of his electric wheelchair for more than one year which has also made it hard for his muscle movements to control the electric chair at this time.
If you’re unfamiliar with the spastic form of the disease according to CerebralPalsy.org it is often characterized as:
Having difficulty moving or having stiff movements. Muscles continually contract, making limbs stiff, rigid, and resistant to flexing or relaxing. Reflexes can be exaggerated, while movements tend to be jerky and awkward. Often, the arms and legs are affected. The tongue, mouth, and pharynx can be affected, as well, impairing speech, eating, breathing, and swallowing.
According to TeenHealth.com
“Cerebral palsy, or CP for short, is the most common developmental disability in the United States. More than 500,000 people in the United States have CP. Every year, almost 5,000 babies and infants are diagnosed with the condition.”
While I will often report on misjustices of the U.S. Health Care system it’s not very often I report on a single individual cause, however the fact that a manufacturer of a chair with wheels and a few harnesses can charge upwards of $10,000 to a patient with special needs amazes and sickens me (Some new motorized vehicles cost less), while his insurances refusal to pay outright angers me.
In any case if you’d like to ready about his fight for a new wheelchair and hopefully to donate to his cause (he has already raised nearly $1000) you can find the donation page HERE.
In the meantime if you or someone you know has Cerebral Palsy feel free to share your own fights with medical providers (manufacturers and insurance providers) in our comments section.