Your opportunity to support affordable access to Ibrutinib and Idelalisib for Aussies - Submissions close next Wed 7th October

Your opportunity to support affordable access to Ibrutinib and Idelalisib for Aussies - Submissions close next Wed 7th October

Australia's November Pharmaceutical Benefits Advisory Committe (PBAC) meeting will consider listing Idelalisib and Ibrutinib for CLL patients.

Idelalisib is on the agenda for a major submission to list it for the treatment of CLL in patients with progressive disease despite previous treatment.

Ibrutinib's second listing attempt is for relapsed or refractory CLL and SLL. No doubt the sponsor will address what it can of the points raised in the previous PBAC meeting, but actual patient experiences - possibly from you! bear considerable weight.

The agenda can be found here, as can the link to the Consumer Comments Submission form:

The deadline for these consumer comments is next Wednesday, 7th October 2015

All CLL patients are encouraged to respond, with the PBAC particularly interested in hearing from CLL patients that have had experience of Ibrutinib or Idelalisib. So particularly if you've had treatment with either of these, please provide the PBAC with your experiences (and compare them with your earlier treatments!!)

Consumer Comments Submission form:

Filling this in is very easy; it's a well guided process. Please concentrate on the advantages of the new drugs compared to your earlier treatments, e.g. they'll work when you have bad deletions and when your response to further chemo treatments is diminished from previous treatments, they have less/less severe side effects, you feel more well and are actually able to do more if that's been your experience, etc.

Thanks on the behalf of all Australians with CLL looking to gain affordable access to non-chemo treatments, particularly when they are running out of options.


21 Replies

  • Neil

    Am I right in thinking this is for Aussie members, sorry consumers, only??


  • Andy, thanks for your question. There's no restriction on who can provide submissions. Given the limited number of patients in Australia that have actually been treated with these new drugs, I'm sure the PBAC would appreciate submissions from anyone that can provide a patient's perspective on how Ibrutinib and Idelalisib perform compared to other alternatives.


  • Great - it won't be me, as I am not yet on drugs, but hopefully others will be inspired!

    Just noticed photo...great one, looking through the you have special gravity-defying powers! or might the photo be inverted!

  • It's the right way up for me :)

  • I love that song... thanks Neil...

  • So Australia really is upside down.

    Great photo.


  • Depends on your perspective!

  • Love it. Thanks for info.


  • Hi Aussie Neil, i am not Australian but my son lives there. I have been on Ibrutinib for 9 months havong relapsed again. I am happy to write a letter in support of the drug but cant work out how to send from your link! Sorry.

  • Hi Norahmaria,

    Thanks for helping!

    When you click on the link in my post, there's a blue link at the beginning of the form that provides you with some background on the process:

    Plus there's explanatory help adjacent to the fields you fill in, guiding you as to what they are after in that field.

    To complete the online form, just go through the process for Ibrutinib or Idelalisib (or both). Here are some tips for some of the fields:

    Date of the meeting: November 2015

    Declarations section: Something along the lines of : Have CLL/SLL, have CLL and have already been treated and am concerned at the shorter remission time likely with available treatments, refractory to existing treatment(s), carer for some with CLL/SLL, related to someone with CLL/SLL, concerned citizen or whatever you consider is appropriate

    How did you learn about this consumer submission process

    H e a l t h U n l o c k e d . c o m / C L L S u p p o r t

    I just opened two tabs on my browser and copied the common content across to both submissions.

    Hope that helps, but please don't hesitate to ask for any further clarification.


  • Done !

  • Hi Neil

    I am having problems with submitting my postal code .

    Can you help


  • Does putting a minus '-' in front of your postal code work? Australian post codes are limited to just 4 numbers, but overseas respondents found the minus trick worked previously. If not, just use Canberra's post code: 2600, where Australia's Parliament House is located :)

  • I had the same proble brenda so ended up putting my sons postcode as he lives in australia. I then added a note explaining that it wouldnt accept my uk one and then imcluded it. To get around the problem put in 2454 and it will accept that.

  • Hi

    I used the postal code that Neil gave me and it went through .Thank you anyway .I have had a problem posting for the last few days .Some of my posts don't get through .

    Take care


  • Thanks Brenda.

    The HU site has been having difficulties for the last few days, so we've all had problems accessing the site :( . It seems to be getting back to normal...

  • Put 2454 in

  • Hi Neil

    I made a submission to the last meeting. Is it worth doing it again?


  • Thanks for your previous support. I assume that the process is done anew, but I really don't know...

  • Separate forms - one for each drug? Any of us can certainly say that we have seen the benefit as members of a support group. There were a couple of categories that we would all fit in. Have you posted this on CLL Forum? Lots of people there using one or the other and / or following on line friends who are.

  • Hi Aussieneil, just to let yoy know i have submitted my letter in support of Ibrutinib. Hope it does some good x

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