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From $375,000 to just $39.50: Spinraza added to the PBS

Parents of children with the muscle-wasting disease known as spinal muscular atrophy will get cheap access to a previously inaccessible life-saving drug in a measure to be included in Tuesday’s budget.

Spinal muscular atrophy is a rare muscle-wasting genetic disorder that affects the motor neurons that control movement. It is the number one genetic cause of death in Australian babies aged under two.

From June, the only effective medication for it, Spinraza, will be listed on the on the Pharmaceutical Benefits Scheme for just $39.50 per script, and $6.40 for concessional patients.

“Those families who currently have children that are dealing with this condition have to shell out almost $375,000 a year,” Treasurer Scott Morrison said on Sunday.

“We are putting that on the PBS. Those families are already going to be able to access their drugs right now, we have been working with the medicine sector to ensure they can achieve it right now. That will reduce that to less than $40 a script. That’s a cost of $240 million, but for these kids and their families there is no more essential service than keeping their kids alive.”

The independent Pharmaceutical Benefits Advisory Committee recommended the listing in April 2018 after rejecting it in 2017.

The condition was brought to light by the McElwee family from Darwin, whose daughter Aviana was born with spinal muscular atrophy type 1. Most babies with the rare genetic condition die before their first birthdays.

The average life expectancy without treatment is nine months. There is no cure.

Aviana was the first baby in Australia, and the ninth worldwide, to start treatment outside a clinical trial. She celebrated her first birthday last August.

“I have spoken to countless families about the need for this vital medicine and I know what a positive difference it will now make,” said Health Minister Greg Hunt said. “It delivers hope for so many beautiful young patients and their families.”

On Saturday the government announced a plan to plan to crackdown on illegal sales of untaxed tobacco it expected to raise $3.6 billion over four years.

Revenue Minister Kelly O’Dwyer said estimates suggested 864 tonnes of illicit tobacco escaped duty each year.

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