Friday, April 15, 2011

Acetylcysteine - Part 3 and still no answer

Unfortunately I've had this ongoing saga dragging out for more than a year now, where I've been waiting for a replacement nebuliser medication named Acetylcysteine to be added to the PBS.

Introduction
Part One
Part Two

Prior to March 2011, the PBAC were responsible for approving medicines under $10 Million per annum. For products over $10 Million the PBAC referred to the Federal Cabinet for approval. 

From March 2011, Nicola Roxon decided to change the rules and make the Federal Cabinet responsible for the review and approval of all PBAC recommendations, further delaying the approval of Acetylcysteine.


I wrote to Ms Roxon (Federal Health Minister) and Mr Peter Dutton (Oppsition Health Minister) in early March 2011. As yet, I have had zero response.


My sister also wrote to Ms Roxon, but apparently she may have used much stronger language than me, as today, she actually finally received a response (after six weeks).






So this letter doesn't tell me anything that I don't already know, and doesn't direct me to do anything that I haven't already done.

At this stage I'm still wasting an entire day every four weeks driving an 80 kilometre round trip to a major city public hospital to wait at a specialist clinic in order to get an approved hospital prescription to take to the hospital pharmacy where I sit and wait for another hour for it to be filled....

Some days I really feel like tearing my hair out.... it's no wonder I'm going grey!





16 comments:

Make mine Mid-Century said...

Bureaucrats.

Let's hope you win the Cleo blogger award and then you can make a national issue of this!

Adverse publicity. Every politician's nightmare.

Knicky Knacks said...

Bloody bureaucrats! I really feel for you. Is there anything your local member can do to help push this agenda for you? It must be such hard yakka going to the hospital all the time. Maybe we could all sign a petition for you? I'd be tearing my hair out too.

Lexi:: PottyMouthMama said...

They seriously suck, if it was them, or a family member, it would be pushed through. Seriously, dickheads.

You deserve better than this.

x

Naturally Carol said...

Nothing is impossible..hang in there..something will come up! Maybe your increased profile will be of help like no 1 comment says, maybe something different, but it will happen.

Michelle said...

As a bureaucrat who writes Ministerial correspondence for a living, I am appalled. Appalled that they didn't provide any answers, and doubly appalled that it took 6 weeks to respond to your sister, and even more time to completely ignore you!

Let's hope that the PBAC approved it, and you'll get a nice Easter present! (mmm drugs - better than chocolate!)

Liesl said...

Unbelievable on oh so many levels.

Fancy making a patient who needs this kind of drug jump through the proverbial hoops to get it. And what clown tabled Acetylcysteine for PBS consideration without the required TGA approval. Surely that muck-up has caused an extra delay?

Here's hoping that there's a favourable and happy outcome from the last PBAC meeting. xx

Fiona said...

Process seems to come before patient well-fare - a lot of that happening around the world and it sucks. As they obviously have made a decision already, I guess you'll know one way or the other pretty soon but even so, this whole process has been farcical.

Cath @ chunkychooky said...

That is a real shit Cam. Fighting "the system" is so hard.

Sandrine said...

That must be a really hard situation, I hope things work out to become easier soon for you Cam.
Sandrine x

trudi said...

Hi Cam, As I am new to your blog I was unaware of your "ongoing saga". But I now feel fortunate that my bronchiectasis is only mild and I'm only reliant on readily available medication.Hope you get some good news soon, and let us know if you need any petitions signed. Trudi

teddybearswednesday said...

SHIT SHIT SHIT, it makes me sooo angry Cam, so it must be sooo incredibly hard for you xo

Catherine said...

I really hope that this gets sorted soon, Cam - so frustrating (and definitely willing to sign petitions / write letters if needed)

Lisa said...

Hi Cam, I think you need to write back and no more NICE CAM! Tell them what you really think and that you will take it to the media. See if you can actually get a response instead of telling you what you already know. Time to get angry I reckon!

Tas said...

Aw, geeze, Cam. Thinking of you and hoping that things get sorted out sooner rather than much later
:(

Cat from Raspberry Rainbow said...

Oh no Cam, still. Hang in there.

Renae @ theredwren said...

So - no new information and they've felt the need to define what 'cost-effectiveness' means which makes me believe they think they're dealing with someone who have no understanding of the system. What an insult. Urgh! I feel your frustration.