Age limit lifted for Spinraza the only treatment for SMA
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My daughter Lily has Spinal Muscular Atrophy type 2, she is 19 but has way outlived her diagnosis of ten years. Spinraza is a new treatment which tricks the body to thinking a faulty gene is good and is having miraculous results.
Recently it was approved in Australia for use and also for the pharmaceutical benefits scheme BUT only for people aged under 18. Lily, who is 19 can have the treatment but at a cost of 1.2 million dollars a year.
This is a ridiculous stipulation with the reason being that there's not enough data on the ages of 12 onwards. This is not true. It has been approved for SMA 1,2 and 3 with age the only rule set down.
Lily has fought and survived for 19 years against this disease so she deserves it . Age discrimination at its best.
I want the age limit lifted as soon as humanly possible as time is one thing we aren't sure of with SMA patients
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