Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Attention Aussie B27 -ves

Hi Davo, I will be interested to see how you go getting the criteria changed. I'm B27 pos , but cannot pass the ESR/CRP and SI criteria. If you need any help putting pressure on the government let me know as I have already tried most things on the pbs with no improvement.

Fingers crossed, Sue

hi,

Lets hope this gets revisited.

With rheumatiod Arthritis theres several different "or's" rather than heaps of "ands" in the criteria.

Looks to me that someone has plucked some rubbish from somewhere and written it up.

I know this stuff is expensive but we need it!

Here's the rest of the stuff from HIC. to be honest I do n;t know why I bother stretching as this si what's keeping me loose.

[urlhttp://www.hic.gov.au/providers/forms/pbs/mp/infliximab_as/additional_info.htm[/url]

David

Fingers crossed for everyone!

David

Hi,

just spoken to the Australain rheumy Assoc, they are replying to an email! The communications person said the more that make representations about the criteria the better. They have not had much as yet on AS and Remicade but it's the best chance to change things.

Also stated was that the rheummies are very frustrated about access to these meds for all conditions.

what us missing is there is not enough feedback from patients!

David

Hi, I'm more than happy to help put the pressure on to get the criteria changed

So - who do we email or write to ??

Ready, willing and able (in spirit if not in body LOL)

Sue

Sue,

Australian Rheumatology Association

http://www.rheumatology.org.au/otherpages/contact.htm

Mrs Robyn Middleton
145 Macquarie Street
SYDNEY NSW 2000
Tel: 02 9256 5458
Fax: 02 9252 3310
email: robynm@racp.edu.au

Apparently the PBAC an advisory for the PBS, but I gave in with them.Robyn says they are n;t hearing enough from patients!

Tony Abbott's Office are only acting as a local MP not in a ministerial capacity, or your Local MP.

David

Hi,

Response from the Austrlaian Rheummy Assoc

Dear David:
Please find below response to your email ...
In answer to the email from David Jordan, the reason for the requirement for
HLA B27 positivity is that in the published trials of infliximab in
Ankylosing Spondylitis those patients who were positive responded much
better than those who were HLA B27 -ve. Accordingly the Pharmaceutical
Benefits Advisory Committee made HLA B27 positivity a requirement for
provision of infliximab on the PBS. It is possible this may change in the
future, but unfortunately the medication is not available for the small
number of HLA B27 -ve patients with Ankylosing Spondylitis unless the
patients fund it themselves with help from their medical fund.

Best wishes
Robyn

Hi David,

Sorry, but I had to laugh at their suggestion that you could fund the cost of remicade yourself with some help from your health fund. Considering that most health funds have a cap of about $500-$1000AUS a year, it seems a little much to pay for yourself.

I have been looking into the costs of Remicade with a private script (it helps that I work in Pharmacy and could get cost price for myself). Working on the assumption that I would need 3 vials at a time to get the recommended 5mg/kg I worked out that it would cost me approx A$2500 each infusion with a total cost of about A$27000 a year. So yeah sure, we'll all just pay that ourselves - I'm sure I've got that amount sitting here somewhere !!!!

If I could work 70 hours a week like I used to I might be able to consider the prospect, but since this disease is kicking my AS and I can now only work a max of 24 hours a week (if it's a good week) their suggestion is the funniest that I've heard all year. Perhaps the governement could start up a new lottery, we could call it Remicade Lotto - at least our chances of winning it would be better than our current chances of getting it thru the PBS - LOL !!!

Sue

Hi,

Thanks made me laugh at our predicament. I've been thinking on the same lines! I'm just trying work out which is cheaper Enbrel or Remicade over the long haul. It's a risk on my super though!

To boot Centrelink think I should go back to work, I just do n't know how to get through to these people. But I've realised how stupid things are getting!

What next I wonder?

David

Dave,
I'm seeing the AS guy tomorrow and will know more details about wether I fit the criteria. I will how ever be forwarding on any issues I have to your contact.
After not being able to get out of bed for the last two days (really cold and wet snap down here that is killing me), being in so much pain that it hurts to breathe I'm almost ready to blast anyone who's gunna try stopping me getting anything that may help!!
Keep your chin up, we will get there.
Take care and keep smiling,
Rose

Hi David,

... just curious about the nos. of people involved in the published trials of remicade mentioned in your post. I think this is worthwhile challenging.
Their concluding statement is ludicrous and irritating ... and how many people have the resources to fund remicade without assistance ?

Cat

Lytton Hazel