https://www.findatopdoc.com/Women-s-Health/Minimal-Side-Effects-with-New-Class-of-Breast-Cancer-Drugs?promoted

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

thank you for the link to this amazing article, I am 4 years post diagnosis for metastatic breast cancer and have done everything I can short of selling my house to access palbociclib, these new drugs are available here in Australia but under strict conditions, the main one being that if you have had chemotherapy which of course nearly all of us have then you dont meet the criteria, eventually one or maybe the other will become available on the PBS, but it will be years rather than months, BCNA have done a amazing job trying to try and move the process along its a process that takes time and that is unfortunately something that those of us with metastaic breast cancer dont always have a lot of, I will be showing this article to my oncologist on my next visit, he is very proactive and has tried several times to get me on a clinical trial of these new drugs, but we come against the same hurdle every time, I have previously had chemotherapy and I am not elagible, for the trials, its very downheartening, as I keep trying, by doing research and keep getting told sorry you do not fit the criteria, these drugs will eventually be available, if not for me then at least for women later, its just a pity the government couldnt hurry things up a bit,wendy55

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

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 .

Costs are always a problem when supplying ordinary Australians with cancer etc yet we can donate billions to Indonesia etc. they forget it's our tax we've paid over the fifty plus years in the workforce. Charity begins at home.

New breakthrough in HR+ & hormone therapy for breast cancer

27 Replies

wendy55
Member
8 years ago
thank you for the link to this amazing article, I am 4 years post diagnosis for metastatic breast cancer and have done everything I can short of selling my house to access palbociclib, these new drugs are available here in Australia but under strict conditions, the main one being that if you have had chemotherapy which of course nearly all of us have then you dont meet the criteria, eventually one or maybe the other will become available on the PBS, but it will be years rather than months, BCNA have done a amazing job trying to try and move the process along its a process that takes time and that is unfortunately something that those of us with metastaic breast cancer dont always have a lot of, I will be showing this article to my oncologist on my next visit, he is very proactive and has tried several times to get me on a clinical trial of these new drugs, but we come against the same hurdle every time, I have previously had chemotherapy and I am not elagible, for the trials, its very downheartening, as I keep trying, by doing research and keep getting told sorry you do not fit the criteria, these drugs will eventually be available, if not for me then at least for women later, its just a pity the government couldnt hurry things up a bit,
wendy55
sandramj
Member
8 years ago
Yes I get frustrated when i hear of breakthrough drugs Etc for anything snd then hear it could be released in two or more years. I get they have to make sure it's ok but surely if the USA have done trials and it's been on PBS there for two years I'd be ok with using it if trials there were ok. Why does Australia need to do our own testing and WHY so far behind the US?
primek
Member
8 years ago
Gosh a new drug in the wings and we are yet to have the first 2 available unless in clinical trial. Frustrating.
Romla
Member
8 years ago
Agreed @sandramj . Prolia also needs a look at - it is used to prevent fractures but been found to prevent bc recurrence yet only available on PBS if osteoporotic and over 70 or have had a fracture . Many bc patients are er+ and if post menopausal are put on aromatase inhibitors which cause bone thinning - they cannot access this drug .
sandramj
Member
8 years ago
That's is SOOOO frustrating. Maybe be we could get on the clinical trials somehow. I'll research.
Glemmis
Member
8 years ago
Interesting read @sandramj, America already has those first 2 drugs listed on their PBS but infortunately we don't & it will most likely be a few years before the third drug is.
Romla
Member
8 years ago
Thank you for drawing this to my attention @sandramj

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New breakthrough in HR+ & hormone therapy for breast cancer

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