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

JustDiagnosed
Member
8 years ago
Thanks Marg, that all sounds like it should. The only thing is, I've been accepted as one of 30 women in Australia to receive ribociclib as a compassionate drug for newly-diagnosed patients. But after completing endless amounts of paperwork, tests and scans, and being told to expect the drug 2 weeks ago, I've only just been told it will likely now be 12 more months. To receive it I need to stay 'newly diagnosed' by not taking Letrozole, which isn't really an option if I want to keep the cancer at bay. Not an easy choice!
Anne-Marie
Zoffiel
Member
8 years ago
Ethics committees are a vital component of any research project. This concept extends past the health arena. Ethics committees ensure that any project is not just lawful, but that it adheres to the ethical standards of the organization that is supporting the proposal.
They can be a right pain in the arse on occasions, but they exist to make sure that no-one spears off and starts conducting experiments, supporting treatments or concepts (or even just asking questions in a survey) that do not protect the participants from potential harm and the organization itself from litigation or reputational damage.
Ethics committees will also, in theory, pick up conflicts of interest and tick all manner of boxes relating to the relationship between the proposal and the organization's operations. Issues can arise when an idea/concept/product is so novel that it can't be reasonably compared against previous projects in the organization's field. It's then that they really have to work--'Is this thing genuine, is it a good idea, is there any evidence to support this? Is it part of our remit? What happens if we are wrong?'
It all sounds like a load of old cobblers, but without ethics committees all manner of shitty behavior would go on. It would be really hard for anyone to figure out what was a legitimate project and what was just the classic evil professor (either established or in embryo) doing what ever he/she felt like.
Ethics committees have been responsible for doing all sort of good stuff; putting in standards controlling the treatment of animals during research in universities, for example.
Not sure if that helps. Marg
JustDiagnosed
Member
8 years ago
Does anyone know what an 'ethics committee' is or does? Why does a compassionate drug need to go before them when I have already completed everything they have asked for?
Anne-Marie
JustDiagnosed
Member
8 years ago
Sandra, this is an awesome idea. Is anyone with me on this one if I try it out?
sandramj
Member
8 years ago
Laws and trials and regulations regarding health issues seem BRUTAL when we are suffering a condition where we can see the treatment, know it's just there ahead of us, yet we can't access it NOW. Medical cannabis is just ONE of these treatments, like palbocliclib and I wonder if the people concerned could form a class action and sue the government for not providing a treatment causing pain and suffering to the patient and family. It may not sound ethical, but seriously when things are a life and death situation we need to act extremely too. Just saying......,..
iserbrown
Member
8 years ago
@JustDiagnosed
from the BCNA site - hopefully gives you an understanding of the work BCNA are doing and please ring them to help you through

https://www.bcna.org.au/news/2017/08/no-pbs-listing-for-new-breast-cancer-drugs-ribociclib-and-palbociclib/
iserbrown
Member
8 years ago
@JustDiagnosed

Ring BCNA for some help..............they are open today - I just copy and paste this for you:

Address: 293 Camberwell Rd, Camberwell VIC 3124
Phone:1800 500 258
Hours:
Open today · 9:30am–2pm
primek
Member
8 years ago
Oh My... how ridiculous. ...can someone from bcna be an advocate for you? This is totally unacceptable. I hope some movers and shakers on here can help you. Kath x
JustDiagnosed
Member
8 years ago
Hi there. I am recently diagnosed with metastatic breast cancer (3 months) and my oncologist wanted to start me on palbociclib but it didn't make the PBS in June. I have been petitioning Federal MPs and the PBS about it, but in the meantime found out about the compassionate scheme for ribociclib for newly-diagnosed patients. This was for people with under 29 days of treatment with Letrozole (I was on day 26) and therefore we decided to stop my treatment and apply (a massive process). 2 weeks ago I was informed that I am one of the 30 Australian women to be granted this drug by Novartis, but we've been waiting daily for it to arrive. Two days ago I had a call from the hospital to say it looks as though it will now go before an Ethics Committee (whatever that is!) which will take up to 12 months. In the meantime I cannot take any more Letrozole or I will lose my place on the compassionate scheme. Am I supposed to take no treatment whatsoever for another year, just to qualify as 'newly diagnosed'? I don't understand why they can do this to us! It's hard enough living in a rural community, as we're a long way from the cancer hospitals as it is! Not expecting any replies, just having a bit of a vent...
sandramj
Member
8 years ago
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.