REID Butler could be going to school, just like most other 16-year-olds. Instead, he is destined to remain bedridden because the medication he needs to simply get around has been suddenly withdrawn from the Pharmaceutical Benefits Scheme.
‘‘I don’t want my boy stuck in his bed for the rest of his life,’’ his mother Amie said.
‘‘It’s hard enough for kids with disabilities, and even though Reid handles all the pain and everything with a smile, this is just appalling.’’
Reid, from Buchanan near Kurri Kurri, was born with multiple physical and mental disabilities and diagnosed with a rare endocrine condition as a baby.
Part of his treatment has involved a growth hormone.
Now that Reid is deemed to have reached puberty the hormone treatment is no longer available on the PBS and will cost upwards of $10,000 a year to continue.
For Reid, the equation is simple. With the treatment, he will continue to live a long and reasonably happy life, despite his disabilities. Without it, he is bedridden.
Doctors acting for Reid have pleaded for the drug to be returned to the PBS.
They, along with Reid’s family and those of several other sufferers in the Newcastle area, say the growth hormone is needed to treat Reid’s pituitary problems.
Able bodies create their own growth hormones but Reid’s body doesn’t, and never will.
Associate professor Patricia Crock, the head of paediatric diabetes and endocrine services at John Hunter Hospital, said Reid’s condition had ‘‘deteriorated significantly’’ since he was taken off the drug.
She has written to health authorities ‘‘in the hope that there is some mechanism by which Reid can receive a compassionate supply of growth hormone therapy’’.
Before a recent operation, Reid was well enough to go to school.
On March 27 this year, his bone growth reached what the PBS guidelines deemed their limit, and the subsidised treatment was withdrawn that day.
‘‘I had no idea that would happen,’’ mother Amie said. ‘‘I’d love to get a job, but looking after Reid is 24 hours a day.’’ Reid’s stepfather already works long hours to meet other medical and living costs. They can’t find the extra $10,000 each year for Reid’s treatment.
Amie said that during eight weeks without the medication, Reid had gone ‘‘downhill fast’’.
When the family scraped together enough money for a 20-day supply of the growth hormone, the improvement was noticeable.
The Australian Pituitary Foundation, which represents about 20,000 people with conditions similar to Reid, has been lobbying the federal government for two years to change eligibility criteria, but without success. The foundation has argued that Australia is the only country in the first world that withdraws subsidies for Reid’s condition.