SMA Australia


Phone: (03) 9796 5744

news genericHI All,
Thank you to all those of you so far that have taken the time to contact us in regards to seeing your local Federal member. To date we have 30 people who requested letters for their local member. This is 20% of the adult community. In the overall scheme we would love to see at least 80% (about 120 people) approach their Federal member for us to have any success at lobbying the government. The feedback that I have had so far from Minister Hunt’s office is that they haven’t heard from the SMA adult community ( either directly or through your local member) and they are under the impression that the adult community aren’t really wanting to access treatment.

This is why making an appointment and going to see your local member in person to gain a personal relationship with them is extremely important moving forward as they will write directly to Greg Hunt to gain his support about this issue. ( that’s how it all works) and that’s how we were able to gain access for the under 18 population. The more people that do this step the better it will help our case in the long run. At this stage I have 150 adults on my list and we will need the majority of you to undertake this step, or we won’t stand a chance whilst campaigning. I CANNOT do this step alone.

I have had lengthy discussions with Biogen and the consumer rep from the PBAC about the following survey and it has been tailored around the specific information that the PBAC would be interested knowing when Biogen were to submit for access for the adult population.

The link is here https://docs.google.com/forms/d/e/1FAIpQLSdrrGO2yBg02Do2Xbrr5fgMHgFxD9UgTL7M5gHwu5vbPmlhcw/viewform?usp=sf_link

The responses for this survey will assist us greatly, so we urge you to fill them in as best possible, and to forward it to those who you think are not in contact with our service. The more accurate number of families that we have the more informed decision the government can make when they look at the submission again.

If you would like further clarification or information please do not hesitate to contact me at the office on 03 9796 5744 and I can happily answer any questions you may have.
I look forward to all your responses – together as a community we can all make a difference.