Two steps forward, one step back – news on access to CDKs in second line treatment
Hello everyone, BCNA has an update on access to CDKs as second line treatment. Pfizer have this week advised BCNA about a new capped access program for the CDK inhibitor palbociclib (lbrance) which will be available from October 1, 2018. This means you still have to pay for around 8 months of treatment (at a cost of around $40000) but after that time it will be free. We understand that this is still a huge cost but it is an important step forward because people will at least know how much they will have to find should they want to proceed with this line of treatment. BCNA is continuing to work for our members in this space and we’re very pleased to be able to advise that we have been able to negotiate with Pfizer that anyone who can show that they have already paid $40000 (for either first or second line treatment) can immediately move across to the capped program and no longer have to pay. For further information, go to our website. Please help us share the news to anyone you know who may currently be paying for Palbociclib.
Metastatic cancer
God I’m over feeling the way I do started Letrozole and Palbociclib tablets this morn and have t been sick but god it’s taking toll on body feeling bit buggered ... stomach is full nerves as suffer from anxiety and panic so get feeling of word and scared like u want to b sick then it goes ... is this normal will it get better each day or worse I keep thinking worse try to relax and I can’t god wish I could turn back time don’t even know how I’m gonna take tablets in morn if I keep feeling like this plus need to get calcium tablet god only knows how I’m gonna take that too feel like giving up already
Palbociclib -new side effects from tablets
I have MBC and have been on Palbociclib (Ibrance) and Letrozole for 30 months. I have tolerated it fairly well aside from some fatigue. Last month the Ibrance capsules were replaced by tablets. I have had severe nausea and stomach cramps with dizziness and hot flushing since changing to the tablets. Has anyone else experienced a change in side effects with a change to the tablets?
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 adviceThank you!
Just wanted to say a big thank you to all of you who sent letters to your ministers regarding CDK inhibitors and to those who encouraged others to write either by sharing our social media posts or posting your letters and responses on the network. Your efforts really did make a difference and we have finally seen an approval recommendation by the PBAC for these important new drugs. Our work is not done yet though as we now need to put pressure on the pharmaceutical companies and government to reach a cost agreement quickly so that Ribociclib and Palbociclib can be placed on the PBS and therefore be more widely available for first-line treatment as soon as possible. Once they are on the PBS for first-line treatment, we will advocate for Compassionate Access schemes to open up for those requiring the drugs for later line therapies. We know there are many women who could benefit from them who have had other lines of treatment and we want you to know we are fighting for you. Danielle Spence, Director, Policy & Advocacy at BCNA, advised ‘CDK inhibitors, when combined with a hormone therapy drug, don’t just slow down the progression of the disease but can also provide a better quality of life without the toxic side effects of chemo. BCNA will therefore continue to lobby for these drugs to be available to all who can benefit from these therapies.’ We will therefore be asking you soon to write again to your politicians so watch this space!
CDK4/6 inhibitors PBS
Hi, Can someone share their experience or knowledge of who can access CDK4/6 inhibitors? I’m trying to establish what my situation would be in the current PBS environment if I became stage 4. I am on an AI for endocrine therapy. The wording in the PBS documents is unclear it says exclusion criteria - treated with AI for more than 28 days. Is this for mets though or all stage cancers? Given that AI is now preferred choice of endocrine therapy for hormone positive cancer, does this mean if those of us on AI for early stage would not be able to use palbo, ribo or abemociclib if we progressed to stage 4 under PBS ruling and would need to self fund? Thanks everyone.
