Mar 29, 2018

Anthony tables a petition calling for the Government to list a life saving drug for children on the PBS

Anthony Byrne MP yesterday tabled in the Australian Parliament a petition from Spinal Muscular Atrophy Australia signed by 11,201 signatories.

This petition requests the Australian Government to urgently fast track the availability of the life-saving drug Nusinersen (Spinraza) on to the PBS list for all patients with Spinal Muscular Atrophy by June 2018.

This life-saving drug will radically improve the quality of life for all patients with Spinal Muscular Atrophy (SMA), the childhood version of Motor Neurone Disease.

SMA is the number 1 genetic killer of infants under the age of 3. It is the childhood version of motor neurone disease. Anthony was honoured to be able to present this petition with many families with children with SMA in attendance. Anthony congratulated Julie Cini, the Chief Executive Office of Spinal Muscular Atrophy, on all her hard work and persistence with campaigning on behalf of the SMA community.

Due to tireless campaigning by those affected by SMA the Minister for Health, recently announced that the Government will subsidize genetic testing to families to determine if they are carriers of diseases such as SMA. The Minister for Health also met with families from Spinal Muscular Atrophy Australia yesterday, and after discussions it was advised that the Pharmaceutical Benefits Advisory Committee (PBAC) could make an announcement on 20th April 2018, which could lead to greater access to the drug Nusinersen.

Today, up to 25 families have received access to Nusinersen. It has changed the course of their lives dramatically. The young children who have been administered this drug are now reaching developmental goals and are experiencing a better overall quality of life. However, there are still over 200 families still waiting to gain access to this life changing treatment.

Every day that passes without this drug means that parents have to watch their children’s motor skills deteriorate, unable to do simple tasks such as feed themselves, brush their teeth or even sit up unsupported. These families live in hope that one day soon they too will be able to access this vital drug.

“It was a historical day for the SMA community to be able to be represented by Anthony in support of the petition and our plight, we continue to hope that the drug Spinraza receives a positive recommendation on the 20 April, so that many more families can have improved quality of life,” said Julie Cini, CEO of SMA Australia.

The petition reads as follows:

To save lives and radically improve the quality of life for all patients with Spinal Muscular Atrophy (SMA), the childhood version of Motor Neurone Disease. It is requested that the Australian Government urgently fast track the availability of the life-saving drug Nusinersen (Spinraza) on to the PBS list for all patients with Spinal Muscular Atrophy by June 2018. This time frame is critical because SMA is a progressive disease. Timely access to this treatment will mean the difference between living and dying, walking or not walking and either minimising the loss of motor function or rapidly losing the motor function that allows people to have any independent quality of life. This is the first and only treatment worldwide for this rare disease population.

The SMA community requests that the Australian Government approves Nusinersen for PBS listing for all patients with Spinal Muscular Atrophy by June 2018, outside of the normal Pharmaceutical Benefits Advisory Committee meeting dates. This action would ensure that families within this rare disease population could gain timely access to urgent life-saving treatment and radically improved quality of life for patients with SMA.

From 11,201 petitioners

Media Enquires: Daniel White (03) 9796 7533

 

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