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Introduction
Part 1
Part 2
Part 3
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.
This sucks cam :( I hope that they change their minds soon...
ReplyDeleteIt must be incredibly frustrating and scary. Costs like that would keep me up at night and I am sure they do you. I have a friend who just became sick enough, and I am sure you can believe that, to qualify for PBS medication at $20,000 a pop.
ReplyDeleteCam, I'm really sorry to hear this. I had thought reading your last few posts that this was going to turn out OK and they were just going through the process to rubber stamp everything. How naive am I, right? Fingers crossed that an appeal can be swiftly made and that it comes up with the right answer.
ReplyDeleteI'll pray!
ReplyDeleteSorry to hear this - that does, indeed, really suck. Hopefully things will change. x
ReplyDeleteI'm so sorry. Cherrie
ReplyDeleteI'm going to refrain from swearing my head off....
ReplyDeleteHow can anyone justify spending that much money on sports? Sports.
Do you know if this product is sold overseas? If it's registered in other countries then surely there's clinical data available.
I'm sorry they're dragging this out so long, it's horrible to think your health is suffering because of government red tape.
Thats so crazy Cam.
ReplyDeleteWheres the justification in that?
Hugs to you.xx
I've been reading through the budget allocations and it makes me wonder who is making the decisions!
ReplyDeleteOh Cam, this is taking forever. It is so wrong, as it is your health we are talking about. Chin up, and lets hope soon some one will make some better decisions (the money for the elite sports makes my blood boil!)
ReplyDeleteDesde aquí mis mejores deseos para tí.
ReplyDeleteQue todo se solucione pronto y tu salud se restablezca.
Un abrazo.
Involve politics and then rational thought and behaviour goes out the door! Really sorry to hear the outcome. Hope the appeal process gives you a better outcome....?
ReplyDeleteOh how CRAP. What an absurd decision. I know that you'll keep on fighting.
ReplyDeleteI just can not believe this is still going on!! This makes me so mad and so frustrated. I really wish there was something I could have done to help. Keep fighting Cam, I know that eventually they will see reason, they have on other similar issues before.
ReplyDeletexx
Well it is very sad to hear about the problems you are having. To be fair it must be very difficult to decide what drugs to put on the PBS, there must be many people with problems like yours waiting for a drug for their illness to be approved. Foreign aid is not a choice for governments these days it is not an option to opt out. What can I say about sport... would we be so upset if it were funding for the arts? Balancing the budget and keeping everyone happy must be difficult I know what it is like balancing the family budget. I do hope you get a satisfactory outcome soon. Best wishes.
ReplyDeletei don't know what to say Cam.
ReplyDeletedefinitely sucks!!
hugs ♥
It's just crazy - and so heartbreaking for you I imagine. I hope you continue to make noise, sometimes I think that's the only way to get heard, just keep making lots of noise.
ReplyDeleteIt is so easy for people in suits in offices to make decisions without considering the people affected by that decision. They should get people who actually know something about things to make decisions about them. What bullshit.
ReplyDeleteI hate sports. I promise never to involve my children in govt-funded sporting activity if it gets you your medication.
ReplyDeleteAnd seriously, your hospital stays are costing them a hell of a lot more than $8,000 a year.
Errh Bloody typical. Politics and common sense never mix.
ReplyDeleteHow incredibly frustrating and just plain awful that someone's health is being compromised by bureaucracy! Let's continue to hope that the powers that be start listening to the people concerned and don't just make decisions based on popularity... best wishes Cam. xx
ReplyDeleteThis sucks eggs Cam...My friends 5 year old daughter is suspected of having the same condition. the same condition. It all seems so useless doesn't it? I hope things look rosier for you in the future.
ReplyDeleteIt is difficult isn't it? People who are not personally affected (ie politicians), but still have the power to say ‘yay or nay’ generally don't have enough empathy. Sometimes they forget that for every single medical advancement there is a very real person whose life is depending on that.
ReplyDeleteAgh. This is utter crap...bloddy bureaucratic bumbling...
ReplyDeletethis really sucks Cam it has made me very angry. I think we should all hound Roxon's office. Maybe if you put a call out on your blog that would help too. All your followers (even overseas ones I'm sure) can bombard her office about it. I am unable to leave home and protest about things my email my local senators ALL the time about live sheep export and other animal cruelty issues like bobby calves and pig stalls. I get so many letters with the same spin but they all say they have to pass it on to Gillards office so maybe this is a start for you too. We must unite and take action for your cause!!! ps all the money that goes on sport gives me the shits bigtime
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