Letrozole FBM
This was my experience trying to get the For Benefit brand of Letrozole, where 100% of the profits go to BCNA and cancer research.
I asked my GP about it, she had never heard of it (it had been a big news story on tv the night before). When she looked up brands of Letrozole on her computer, the FBM brand was not listed as an option. I rang Bigbrand Chemists R US, where I get my Sandoz brand of Letrozole each month for $28. They hadn't heard of FBMedicines. After back and forth, they discovered yes, it was available, but I would have to order it in as a special order. So I did. When I picked it up a few days later, it wasn't till I got home that I saw I had been charged $38.80, a difference of over $10. I double checked on the FBM website (www.forbenefitmedicines.com.au) where it assured me I would pay approximately the same price. This started to sound a bit dodgy, so I rang FBM direct, and spoke to John (an amazing person who is "retired" and doing this and taking on the big pharmacy suppliers for purely humanitarian reasons....talk about the next Australian of the Year!). What I learnt was that chemists can only charge a maximum amount ($38.80) for most items on the PBS, but they are allowed to discount. So when a big chain buys lots of drugs from a company, they can afford to discount those quite dramatically. The same might not happen for smaller suppliers (like FBM). So....armed with my new knowledge, I rang back Bigbrand Chemists R US and said I was shocked at the price difference between the two products. They said the higher price was because it wasn't a product "on their list", and they had to go to a lot of trouble ordering it in. (Apparently this "trouble" involves ticking a box on a computer screen.) But they would be happy, as a favour to me, to give me the FBM brand for $30. I said that I would be on this drug for ten years, would be buying it from them every month for those ten years, so could I get it put on their "list". But, no, each month I will have to ring a day or two before I need it, ask them to order it in, and when I pick it up negotiate the price down to $30, still $2 more than the generic Sandoz brand, but $2 I am more than happy to pay for the bigger picture.
So my little experience is a snapshot of how the big pharmaceutical brands are able by sheer volume, to discount and push their brands, and how it must be very attractive for the bigger chemists such as Bigbrand Chemists R US to play along with that to the detriment of smaller brands, even when those smaller brands are giving back to the community in such a terrific way.
John at ForBenefitMedicines actually implored me to stay on the Sandoz brand, because the last thing they wanted was for the patient to be out of pocket or inconvenienced (I felt my heart twang at that comment). When I said I wasn't particularly tied to Bigbrand Chemists R US and maybe I could go to one further away that might offer a better price, he again reiterated that it was not FBM's intention to put the patient to any extra trouble. I worked it out then...FBM are for the patient!
So I guess what I have found out is that in the big business scheme of things, not many have heard of FBM, and if they have, they might be pretending they haven't. So spread the word, maybe take a photocopy of the info from the FBM website next time you go to the GP, or your pharmacist, or your specialist, and talk about it to friends who might be on the same medicines. FBM will hopefully be expanding its medicines for the treatment of other illnesses in the not to distant future, not just breast cancer treatments.
I don't want my experience to deter people from chasing up LetrozoleFBM, in fact, the opposite. Once you know a little bit about it, it is easy, but you have to be persistent. Ask for it, keep asking, you might have to make a phone call.
In the meantime, I will be putting my order in every month, negotiating the price, picking up my Letrozole FBM, paying that $2 extra, for the next ten years. Because in the long run, I think it is the best thing to do. I get my medicine, and the profits go back to BCNA and cancer research. And when John, having donated his retirement to help others, is up on the dais being recognised for his altruistic generosity, I'll be applauding.
Comments
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Comparing the varying cost of medications from one store to the next can give you the equivalent of an ice cream headache. There are even differences for the same drug with the same franchise in different towns.
The most disappointing thing that I found was the cost of buying drugs at hospital pharmacies. Public hospitals, being government owned have to charge the full PBS price on all scripts. As @Jane Elizabeth has pointed out, independent pharmacies can charge what they like--occasionally over the PBS price but frequently heaps below. Endone at the hospital here is $21.30, it's $7.20 at the chemist in town. Discount pharmacies make up any shortfalls by keeping you in the store for long enough that you will buy a heap of bits and pieces--whether you need them or not.
Chemist Warehouse here charged me $34.20 for my Femara script this week. The generic is nearly $10 cheaper. Since I have only just started taking it, I decided to wear the extra cost for a couple of months, mainly because I want to be sure that I can say any side effects are from the drug, and not due to some sort of different binder on the generic product. That's something I won't be able to afford to do long term, so I'm going to have to shop around to find a cheaper alternative--one way or another.
I've never heard of FBM. Maybe that's the brand the hospitals should be stocking since they are going to be charging premium prices anyway
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I was told the same by my chemist at this point in time but people who are on health care cards won't pay any more at least. What I'm doing though is contacting our local paper to promote my pharmacy having the commonsense to now stock this item and to ask about other products that they can purchase at the chemist. We are hoping to do this as a BCNA promotion. Was hoping to have a pink lady to hold up but alas nothing has arrived. @Cosette_BCNA ...do you know about that?0
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I've recently started on Letrozole FBM, I also paid the same as it's a brand they don't stock and had never heard off. (Priceline pharmacy) When I explained why I wanted this brand (they like myself were impressed). If it wasn't for my lovely oncologist I'd have no idea about this brand.0
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Thanks @Cosette_BCNA. Any idea when...just will be contacting tbe paper next week.
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@Cosette_BCNA . Thankyou. X0
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Hi Jane Elizabeth
This is Kathy from the BCNA Policy Team. I just wanted to say thanks for your terrific post about the FBM brand of letrozole - Letrozole FBM. And thanks for your persistence and insisting to your pharmacist that you wanted that particular brand. We really appreciate your support.
We've been in touch with the two blokes who run FBM, John and Barry, and they are aware of the issues you raised especially around pricing. They are really keen that women aren't out of pocket any more than they need to be, which is why John suggested to you that you buy the cheaper brand. But thanks for sticking with FBM and supporting us in the process! There is more information about FBM and their social enterprise business model where they donate all the profits of their two breast cancer drugs (Letrozole FBM and Anastrozole FBM) to BCNA (to support people diagnosed with breast cancer) and the Breast Cancer Institute of Australia (which funds breast cancer research) on our website.
Thanks to primek too for raising awareness in your community.
Kathy
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I'm happy to say I was offered the FBM Letrozole without prompting by my oncologist. I too am about to start 7 - 10 years on an AI and will be very interested in availability and price.0
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I've just been into my local Priceline chemist. Pharmacist Tom, who is very nice and always helpful said that he'd first heard of FBM about a year ago when customers began asking for their medications. He didn't have any Letrozole FBM on the shelves so has ordered it in for me, and will ensure it's there every month. The price is $28.50. Non FBM Letrozole is $28 there. Chemist Warehouse is quoting $24.39 for regular Letrozole, but for now, I'm happy to wear the difference.
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Made an enquirer at my pharmacy today - they didn’t know about it so explained and hope it’s there next time.0
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Great to hear that word is spreading about FBM brand medicines. I have changed from Letrozole to Anastrozole to see if my sore bones/muscles would improve (they have), and happily, FBM also do anastrozole, so all good! Even better, anastrozole is cheaper than letrozole, so I'm rolling in money (I wish!). I will never be a fun run/morning tea/mountainclimber fund raiser type, so sticking with the FBM brands is a small way for me to contribute. Yay2
