Juanita Vernon was losing the ability to wash her hair or use knife and fork, until she started taking a drug that slowed down the progress of her spinal muscular atrophy. But the drug came with a hefty price tag.
abc.net.au/news/life-changing-drug-spinraza-gains-pbs-approval-for-adult-use/101372898"I have hope again," says Juanita Vernon as the 52-year-old tearfully discusses her feelings about being able to access incredibly costly medication that had drastically improved her quality of life.
The medication, which increases the production of a certain protein, costs more than $1 million per patient in its first year, and has been available on the Pharmaceutical Benefits Scheme for people under the age of 18 for about three years.The drug is expensive because of the high cost of trialling and manufacturing the precision medication.
Her daughter, Matilda, would have died by the age of two without treatment, but thanks to taking Spinraza she is on her feet and in the classroom."And she's just had her sixth birthday in July. She's now at school, and she's walking," Ms Donald."So there's nobody that's missing out, and that is just the most amazing success story achievement."
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