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Old Fri Jan 21, 2011, 07:45 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Twisted logic.

Hi, yes, I know where you're coming from.

Vidaza was not approved on our Governments PBS until starting February this year, so when I needed to start it May last year I applied to my health insurance to totally or partially cover the cost. They have a special fund to help people cover the cost of non PBS listed drugs.

My request was refused on the basis that the drug wasn't PBS listed so must be considered experimental and they would not fund those type of drugs. With that logic it means they would NEVER help anyone with any non PBS drug which is why the fund was set up in the first place. Talk about Catch 22. Nothing but greed. They would't even help with the cost of my copper needles which are also non PBS and $122 a week. There is no way copper replacement is experimental but this time they wouldn't even give a reason for declining. I'm sooo over it. I have paid out over $45,000 for drugs in the last 8 months. I can't keep paying out like this for much longer, I really need to go back to work but my employer won't let me because I still can't walk properly and what use is a nurse on a wheely walker?


I have been paying into the same health fund for many years and until I developed this problem, the only time I had used them was when I had a neuroma removed from my foot in day surgery back in 1990.

Ahh, that felt good. Venting over.

Good luck.
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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