Mar 29, 2018

SMA Petition Speech – 29th March 2018

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 (Spinraza) 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 citizens (Petition No. EN0462)

Petition received.

Photo of MPMr BYRNE: SMA is the No. 1 genetic killer of infants under the age of three. It’s the childhood version of motor neurone disease. I’m pleased to be able to table this petition, and I wish to congratulate Julie Cini on all of her hard work and persistence in campaigning on behalf of the SMA community: thank you. And thank you to the families who are here supporting her today.

An example of this tireless campaigning is the recent announcement by the Minister for Health proposing that the government will subsidise genetic testing to families to determine if they are carriers of diseases such as SMA. This announcement, however, is a long-term goal, with the minister admitting that this kind of universal access to genetic testing could take up to 10 years. We need to do something before that.

As of today, 25 families have received access to nusinersen, known as Spinraza, which has changed their lives dramatically. The young children to whom this drug has been administered are now reaching developmental goals and experiencing a better overall quality of life. However, there are over 200 families, some of whom are here, that are 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 will be able to access this vital drug. Therefore, as I said, I’m pleased to present the petition to this house on behalf of the people standing behind me and those that will be listening.

The petition reads that they want to save the lives and radically improve the quality of lives for all patients with spinal muscular atrophy, the childhood version of motor neurone disease, and they request that the Australian government urgently fast-track the availability of the life-saving drug Spinraza onto 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 be literally the difference between living and dying, walking or not walking, and either minimising the loss of motor neurone 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, as demonstrated by the people behind me and the 11,200 signatures. We need this drug. We need this drug on the market as soon as possible, and listed so that families like those behind me can have access to this life-saving drug.

 

Quick Links

Quick Link Quick Link Nation Building Australian Electoral Commission Sporting Champions Labor History Quick Link