Forum Discussion

Kat09's avatar
Kat09
Member
6 years ago

Palbociclib

Please excuse my spelling guys, the names of these drugs do my head in! I have a friend who is currently taking this medication as a last attempt at slowing the progression of her metastatic cancer, she has been paying for this drug since the 26th of Feb out of her own pocket - 5k a month...it is now on the pbs from the 1st May but she doesn't qualify as she isn't a new patient. What the?. This drug is helping her surely there is some way of getting her access to it without her having to  pay the exorbitant monthly price she currently is...if any of you have any ideas on how I might be able to get some help for on this I'd really appreciate it @Zoffiel I know you usually are pretty up to speed on the politics of these things?
Thanks for any advice 
palbociclib
  • Patti_J's avatar
    Patti_J
    Member
    6 years ago
    @Kat09. This was the second time that I have had to wait for Palbociclib. They had the two higher doses at the hospital pharmacy, but not the lowest dose.
    Apparently two warehouses near me didn't have the stock.
    It was annoying because I also had to change my appointment with my oncologist.
    Finally, nearly a week later, my pharmacist hand delivered me my medication.
    It is crazy! The Palbociclib is only working on my liver mets and lymph nodes. My bone mets are still severe and generalised.

  • Kat09's avatar
    Kat09
    Member
    6 years ago
    @"Patti J" that must make you so mad. You think the drug company would know when you would be requiring your meds, it's not a cold you have! Can't your Onc make arrangements through another channel to get them for you so you don't have to wait?... Hmmm bureaucrats!!!!!
  • Patti_J's avatar
    Patti_J
    Member
    6 years ago
    And yet, even if you are meant to be on Palbociclib, the drug company can't supply the correct dose.
    I have been waiting nearly a week for my medication. The drug company rep. has no idea when it will be available.
    Not happy!
  • primek's avatar
    primek
    Member
    6 years ago
    I think you need media intervention like Sunday night. Amazing hiw something like that can mean the companies or government changing the policy.
  • Kat09's avatar
    Kat09
    Member
    6 years ago
    @"Patti J" , yes there are so many different variances in who qualifies for what it does make it extremely confusing for us all. I'm really glad to hear that your Mets are stable x
  • Patti_J's avatar
    Patti_J
    Member
    6 years ago
    @Kat09. I don't fully understand the politics surrounding Palbociclib.
    I have been taking it since October, 2018. Fortunately my oncologist was able to get me on to the compassionate access program by 1st October, 2018. This meant that the most that I have had to pay was $50.
    I am now on the lowest dose because my white cells are always so low at the end of each cycle.
    Being on this drug means that I do not have to use oral chemo.
    So far, everything for me, is stable.
    Sometimes I forget that I have Mets. For me, at the moment, life is about experiences. Live in the present.

  • Kat09's avatar
    Kat09
    Member
    6 years ago
    It is. My friend has been battling with her cancer spreading for over 18 months and in the process suffered a heart attack and has had her lungs drained of fluid fortnightly for months. They recently operated on her lungs to help prevent the build up of fluid and thankfully this has helped. She is remarkably strong and went from being barely able to walk a few months ago to now driving occasionally again. I believe this drug has aided her substantially in her fight and am saddened that the financial aspect of treatment can't be eased a bit for her in what may be her last few months. ( hopefully years but unfortunately we don't think that's likely ):'(
  • brightspace's avatar
    brightspace
    Member
    6 years ago
    Totally disappointing for those of us who having been on an AI
    We no longer fit the strict criteria set by the Pbs
    Their statement means that we dont get it free
    Patient $ numbers are factored in to the submission
    Yes it is at odds with the US mets patients who do receive this drug as a second line treatment
  • Kat09's avatar
    Kat09
    Member
    6 years ago
    @Glemmis yes you are right in saying that and my friends oncologist has gone down the compassionate track, 5k for 8 months and then it's free for her. My issue is why now that it's on the pbs should she have to continue paying 5k a month for a drug that is now subsidised...especially given she's only been on it 2 months, surely compassionate grounds should factor in somewhere or commonsense should kick in...it is great that this drug is now on the pbs and so much work was done to get it there but shouldn't it be there to help everyone that needs it. I'm on a bit of a rant tonight,  sorry girls!

  • Glemmis's avatar
    Glemmis
    Member
    6 years ago
    Hi @Kat09, I understood that before this medication came onto PBS that one you were out of pocket $40,000 it was then free, not sure if this is right though. Also your friend’s oncologist can request a compassionate scheme where it is free after paying a certain amount. Other ladies may be able to clarify.