http://www.abc.net.au/news/2016-05-23/hopes-ama-will-pass-new-stroke-treatment/7436406
By Elly Bradfield
An Australian family is pushing for a controversial
new stroke treatment to be made available in Australia, saying the
results have been life-changing for their son.
Key points:
- Off-label use means using a drug outside of its original purpose
- Use of perispinal etanercept for injuries such as Joel's is not approved by the AMA
- Ms Graham is leading a push for the treatment to be available to Australians
After suffering a brain injury as a child, Joel Shepherd was unable to communicate or walk and had constant seizures.
But since receiving the new treatment for strokes in America, a drug called perispinal etanercept, his condition improved dramatically.
Mr Shepherd's mother, Coralie Graham, said up until the treatment her son spent most of his life relying on other people.
"He could walk only if somebody held him up; his speech was very, very poor. His swallowing was poor," she said.
"He had frequent chest infections. His continence was very poor. His concentration was poor. His memory was poor."
Ms Graham said there were not many options for Mr Shepherd.
"We were kind of told 'this is your lot in life, here's your human, go home and deal with it'," she said.
"For 23 years we had basically no hope."
But two years ago Ms Graham saw a TV program on perispinal etanercept.
Entanercept is a drug commonly used to treat arthritis, but American doctor Edward Tobinick developed a new use for the drug.
The perispinal method involves injecting the drug into the spine to enter the vascular system.
"This is a completely different application. We're using it for neurological inflammation, something it was not originally designed for," Dr Tobinick said.
The use of the drug for something other than its original purpose is called off-label use.
"All off-label uses begin as something that would be controversial," Dr Tobinick said.
The Australian Medical Association (AMA) has warned there are clinical, safety, ethical, legal and financial risks related to using off-label drugs.
But Ms Graham said as a nurse she was confident in the treatment, and 93 days after hearing about it had mortgaged her house to pay for the trip to America.
"[Joel is] now able to walk unassisted for a fair distance; he chases me sometimes in the park, which he enjoys," she said.
"His cough reflex is back and he's able to swallow. His concentration has improved markedly, his memory has improved."
I remember crying in the room because I was so moved by his treatment response.Dr Edward Tobinick
Dr Tobinick said Mr Shepherd's story was one he could never forget.
"I remember my initial emotional reaction when I saw Joel improve within minutes — able to tie his shoelaces for the first and then start to walk unassisted," he said.
"It was extremely moving and I remember crying in the room because I was so moved by his treatment response."
Mr Shepherd said it was the simple things that made the most difference to his life.
"Walk, run, talk better, to go to the toilet," he said.
Now Ms Graham is leading a push for the treatment to be made available to Australians.
The delivery method remains untested in Australia.
Griffith University has a clinical trial approved, but it is unfunded.
The group has raised nearly $90,000 of the $250,000 needed and is confident the trial will go ahead.
Ms Graham said with her son's help, she would keep fighting until other families had the same access.
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