New breakthrough in HR+ & hormone therapy for breast cancer

Glad to hear BCNA is lobbying about this drug on our behalf - agreed very frustrating when already trialled and in use in US with good reports on its efficacy but still think cost is the underlying problem for the delay here

Hi, BCNA have been fantastic in doing all they can to make this happen, there was a petition recently which was sent to the government regarding access of palbociclib to women and men who have metastatic breast cancer, they were successful in that those women/men who had been purchasing palbo overseas were now able to receive this drug at no cost,these people had been paying $10.000 per 28 days for this drug for about a year so had spent a very large amount of money until BCNA put pressure on the drug company to allow these people to have the drug, you can read all about this on the bcna website,we can only keep pressuring the government to try and get these drugs on the pbs, also there is the medicare safety net after paying so much for all of your prescriptions you are entitled to receive them at the lower cost,that also applies to out of pocket money paid for anything medical, then the government pays a higher rebate, believe me its worth looking into, my partner has to have injections in his eye every six weeks at a cost of $400 out of pocket and it wasn't until someone mentioned it to me that I rang medicare and $775. was deposited in our bank account  as we had well and truly reached our limit and had overpaid, no one had actually informed me, although there is information out there regarding this, it was a matter of me doing some investigating, so I don't know if this helps, I get all my prescriptions from the same pharmacy and even when we went away when I had to purchase my drugs, I asked for a pharmacy receipt, which I will take to my pharmacist for him to add on to my current list,I hope this info may help,
Its a beautiful day outside and I am going to enjoy it, its just so sad that in the position we are all in that our time and energy has to be taken up with all of these matters,
wendy55 

Guess I'm saying it needs to be a coordinated effort as we do have the numbers.

Hi @wendy55 and @wendy_h67 I really think random letters from us re treatments will get nowhere- and yes I have sent a few of my own lately re Prolia. However if all the women experiencing breast cancer do so that will get attention as we vote.I can't remember exact numbers but thought I read 40 odd new diagnoses daily - that's a hell of a lot of voters. It's difficult to do when we are struggling with our health but that's when outfits like BCNA come in to organise and apply pressure to government 

Hi Wendy, I have heard that you can't get Palbociclib when you have already been on chemo even though you have metastatic breast cancer.  So I have no chance as I'm back on chemo again. It makes you feel like giving up. Good on you for contacting the Fedral Health minister. It does seem so unfair and discriminating. I have been a bit unsettled at the moment as my oncologist is fighting cancer herself and had to get a locum  in to take over. I will be meeting the new doctor next Friday. I am also seeing a radiation oncologist tomorrow in regards to getting some pain relief. You have done well to have stayed on xeloda . Hope everything goes well for you. Us Wendy's are strong women. I just have to remind my self that sometimes .

@wendy55 I think it's more government not wanting to pay the gap between PBS and full price - the drug companies are happy to sell it to make profit

yes you would think so, however that is the criteria for these drugs if you have metastic breast cancer, and you have previously had chemotherapy then you are not entitled to these drugs,you can purchase palbociclib for approximately $5000. per month, which is out of range for me, I wrote a letter to Greg Hunt the Federal Health Minister and explained my situation and as far as I was concerned it was so unfair that I or other women coulod not access this drug, to me it is discrimination, they just have drawn a line in the sand and said this is the criteria and no exceptions,so where do you go from there, I will stay on my current chemotherapy of Xeloda which is oral} as is{ palbociclib} for as long as it continues to work, put up with the side effects and hope that in the near future, these pharmaceutical companies will change their minds, or the government will be able to put pressure on them to change the rules, until then we just have to keep fighting, the drugs are there we just cannot access them, its ridiculous that they have all these different criteria for these drugs, which if they didn't , would improve the lives of so many women, not just with palbociclib but there are so many others, which one person can get but another person cannot, go figure!!! because I sure as hell cant.
wendy55 

@wendy55, I have had chemotherapy and am having palbociclib as part of a trial, but my cancer is not metastatic. I don't understand why having had chemo for metastatic would exclude you? I would think chemo would be given to almost everyone with metastatic cancer

Hi @sandramj, I am currently participating in the Pallas trial for early breast cancer and taking palbociclib in addition to my letrazole and zoladex(I'm pre menopausal) I have only had one cycle (21 days) of the palbociclib so far and did become neutropaenic so had to have the normal 1 week plus an extra week off, and restarted the drug today. So far I have felt good, no other side effects. Thanks for the link to this article, very interesting.

Hi all,
Here is the link to information regarding the campaign to get the government to include Palbicibib and Ribociclib on the PBS. It also includes information regarding the compassionate access program operated by Novartis.   https://www.bcna.org.au/news/2017/08/no-pbs-listing-for-new-breast-cancer-drugs-ribociclib-and-palbociclib/