Change the PBS criteria to allow all adults who have CP to access Botox injections
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Currently, adults who have cerebral palsy and have subsequent spasticity either impacting their lower or upper limbs (as well as other parts of the body) are not eligible to receive PBS subsidized Botox intervention UNLESS they commenced treatment as a paediatric patient (ie. less than the age of 18).
For many young adults living with CP, Botox was not available as an intervention to assist in the management of spasticity when they were in the 'paediatric' age range and instead multiple orthopaedic surgeries including muscle and tendon lengthening procedures were undertaken.
As a result, many young adults living with CP are missing out on Botox intervention which can provide significant relief from the pain and stiffness experienced due to spasticity. This relief can, in many cases, enhance their function and level of independence.
Without access to PBS subsidized Botox intervention, the cost of this treatment can be astronomical. The cost to the patient (without the PBS subsidy) is $1625.94 per vial (100 units) of botox.
As an example from my own personal experience below:
I am a 32 year old with mild Cerebral Palsy. I live an independent life and live at home with my partner, I drive, I work full-time and am an active contributor to the community. I receive periodic botox injections and regular physiotherapy which assist me to maintain this independence and reduce discomfort from spasticity.
I receive Botox injections approximately every 6 months to assist with managing my Spasticity. Each time my treatment consists of approximately 11 injections (600 units of botox) performed by a Rehabilitation Physician.
This would result in an out-of-pocket expense of $9755.64 per treatment; so having this twice per year would result in an out-of-pocket expense of $19, 511.28!
That's nearly $20 000 per year that adults who have CP who weren't treated with botox prior to turning 18 would be expected to pay to access this treatment that those who commenced treatment before the age of 18 have access to under the PBS.
Thankfully, to date, I personally have not had to pay these astronomical costs for my treatment as I have been fortunate enough to participate in sponsored training clinics where registrars are taught botox assessment and administration techniques by physicians. Unfortunately, this situation is not guaranteed to continue and not all adults who have CP are fortunate enough to be able to access these clinics.
This is an extremely inequitable and ultimately discriminatory situation and one that I strongly feel needs to be brought to the attention of the government and quickly changed!
Please consider signing this petition to encourage the government to consider altering the PBS eligibility criteria for adults who have CP to be able to receive botox intervention under the PBS to assist with spasticity management regardless of their age or when treatment was commenced!
This petition will be sent to The Hon. Greg Hunt MP, newly appointed Federal Minister for Health and Sport for consideration.
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