I received another update on the status of Acetylcysteine being listed on the PBS thisafternoon.
Although I would dearly love to be able to share the documents regarding the decision right here, I can't as it may jeopardise the appeals process.
So here's the current outcome in point form:
In April 2010, the PBAC recommended that acetylcysteine be listed on the PBS as a replacement for mucomyst which was no longer being manufactured.
On 28th Feb 2011, the TGA granted approval for the registration of acetylcysteine
The PBS Listing section advised that acetylcysteine would be listed on the PBS from May 1st
The next day, the Federal Goverment (under Nicola Roxon as the Health Minister) decided to change the rules and now Federal Cabinet reviews all PBAC recommendations under $10 million turnover (because the politicians REALLY ARE qualified to make medical decisions).... or so they think.
The latest news is that acetylcysteine has been knocked back the PBAC for a PBS listing due to 'lack of recent clinical evidence' and 'cost effective data'.
It would cost the government approximately $8000 per year for my treatment. The treatment allows me to stay out of hospital (saving them money), it allows me to keep working part-time (saving them money), and keeps me off the lung transplant list (also saving them money). Not only that, it also allows me to still have a quality of life.
Why does a beauracrat in Canberra get to decide whether my life is worth a measly $8000 per year?
Especially considering that its Budget night in Canberra tonight.... here's a few figures
I don't want to get all political, and I know every sector is important but here's just two where I could maybe get the $8000 from:
The government is going to spend $4.84 billion on Foreign Aid
They will also be spending $300 million to boost sports to an elite level
At this stage, I am still getting a specially authorised and funded supply from one of the major hospitals, upon the understanding that it would soon be on the PBS.
So now, I just wait.... again.