Ann: Proteomics receives $1.1 million in R&D tax incentive, page-19

Absolutely agree with you there on all points in your post @dreamingreen.

There are academics, Specialists & health professionals lobbying Parliament & Govt to advocate for patients & breakthrough therapies as we speak (I cannot speak for autism therapies different clinical area, but you would hope so for children on the Autism spectrum), things that are available in the USA & EU for some time, before Australia approve things, at dinosaur speed.

We encourage our patients & families to write letters to their local Federal MP, those that are in clear need & that these treatments will be life changing for. People who are suffering from lifelong conditions including children, & taking into account the many burdens patients & families face, not just clinically, but also financially (having to give up work to be a carer, sell their home even), the emotional & psychological burden, educational burden with time off school, the stress on relationships, the cost of frequent hospital admissions...the list goes on. The halo effect around chronic conditions, whatever they may be.

Australia is very involved in International clinical trials. This is the evidence that is needed. Even if it is there, the Govt will argue long term benefits & cost benefit (especially in high cost drugs), so you need to have a very organised & data producing group for facts on all of these things.

There are very organised groups (Medical specialists/Academics, Health Professionals & Patient Advocacy group in many clinical areas). Do you think a fob letter or 2 will make us give up? LOL definately not. And it depends on your MP; some are incredibly supportive, some fob.

I don’t think you should give up either to get ABA therapy funded through Medicare if International research has shown benefit plus the only thing that has helped your child.

I hope you are feeling better @dreamingreen & have the strength now to participate in an advocacy group & share your journey, because patient & family stories are very important in Govt advocacy & also to approve therapies & groundbreaking drugs in other clinical areas. Don’t give up!!

For PIQ CKD, a bit different. A reasonably low cost test that can save lives, prevent disease progression & can save the Australian healthcare system millions if not billions on Medicare in ESKD that can be put towards other much needed healthcare issues, particularly paediatrics. Stats from Canada were very telling in CKD. Australia will follow suit, it’s only a matter of time.