SMA Australia Alba Prime

We know the non-recommendation of both Nusinursen (Spinraza) and Evrysdi (Risdiplam) for the adult community has left many feeling deflated. We want to acknowledge this and also reassure you; we haven’t stopped in our quest to work with the relevant stakeholders to ensure that future submissions to the PBAC are the best representation of our adult community – but we can’t do this without YOU!

So we are hosting this follow-up webinar with Dr. Lauren Saunders, from St Vincent’s Hospital in Melbourne, and Jo Watson, the Deputy Chair and Consumer Rep for the PBAC.

We want to respond to your questions that you have regarding not being able to access treatment. Dr. Lauren will be answering any clinical questions, and Jo Watson, any questions you may have for the PBAC.

SMA Webinar Series Number 9: What about me? Accessing treatments for adults
We are asking YOU to submit questions to SMA ahead of the meeting so that we can address them on the Zoom call with everyone.
We also want to plan for the next steps and how you can be involved.This is really important moving forward – as the united voice of the community, with regards to access to treatment is vital right now.
We invite and encourage you to attend. These meetings have been organised to keep you in the loop and inform you what is needed moving forward.
Please feel free to share amongst the community for those we may not be in touch with, the greater the conversation we can have around this issue, the better we can help you to gain access to medicines.

Now that Newborn Screening (NBS) has been recommended, we turn our focus to the Australian states and territories, as this is where NBS gains funding. Each state has to allocate in their budget to pay for testing.

Some states are actively looking at funding NBS, whilst in other states it’s not even on their radar for funding, so we together as a team need to campaign as a team to highlight the need for NBS in each state.

As we have previously stated, a person’s postcode shouldn’t determine if they get screened at birth for SMA.

Why do I need to see an adult Neurologist with Lauren Sanders