Forum Discussion
Prolia should be on PBS
Mainly for anyone who is er+ post menopausal and taking Aromatase Inhibitors but guess the more that join in the better as is a bit of a focus on bc atm with the passing of Connie and Olivia's recurrence.
As you know Aromatase Inhibitors whilst highly effective in prevention of bc recurrence do thin bones and cause fractures.Currently Prolia injections ( denosumab) are only available on the PBS price to women over 70 or those under 70 who have a fracture. Many bc ladies who are under 70 er+ and post menopausal are osteoporotic with low T scores who should not have to endure a fracture before accessing Prolia at the PBS price .Prolia I gather also works synergistically with hormone therapy in prevention of bc recurrence.
I have drafted and sent an email to Christian Porter federal minister for social services who has recently issued media releases regarding bc - there are other federal MPs that may also be open to this issue at this time including our local MPs. Anyone else interested in stirring the pot ? Happy to upload my email as a template for you to customise if required.
Sisterhood is powerful!
As you know Aromatase Inhibitors whilst highly effective in prevention of bc recurrence do thin bones and cause fractures.Currently Prolia injections ( denosumab) are only available on the PBS price to women over 70 or those under 70 who have a fracture. Many bc ladies who are under 70 er+ and post menopausal are osteoporotic with low T scores who should not have to endure a fracture before accessing Prolia at the PBS price .Prolia I gather also works synergistically with hormone therapy in prevention of bc recurrence.
I have drafted and sent an email to Christian Porter federal minister for social services who has recently issued media releases regarding bc - there are other federal MPs that may also be open to this issue at this time including our local MPs. Anyone else interested in stirring the pot ? Happy to upload my email as a template for you to customise if required.
Sisterhood is powerful!
40 Replies
- I'll have a look yes my Oncologist told me this 18 months ago before I started it.
- Just thought I'd show you the link about prolia reducing breast cancer recurrence.
http://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-some - @Romla that sounds like a great idea, I'll hold off and wait for you. :)
- @melclarity I emailed [email protected] who is the Federal Minister of Social Security who has had some press coverage in this area lately. But I think my letter needs improvement and when the kids go to school should have access to a proper computer ( iPad mini not as easy without a mouse or decent size screen)and will draft a better letter including your points re cost and also that Prolia apparently reduces recurrence by 18% . So if you'd like to hold off a couple of days I will get back to you with a better template. I might also be able to see who else could also receive it eg Minister for Health ?? Etc
- @Romla could you pm me the email address of the Federal Member you sent your email please? I'll do one too and see if we can try and get this moving. Melinda xo
- Interesting @primek similar PBS criteria for risndronate the other oral bisphosphonate I was prescribed
- Regardless Prolia is being given in US for prevention of recurrence of bc regardless of bone density and have not read oral bisphosphonates offering the same risk reduction
- Either the criteria for PBS priced fosamax has changed or I had a fracture which my specialist failed to advise me of as I was put on fosamax at the PBS price at 57 for osteoporosis . Wonder if criteria is the same for other oral bisphosphonates ? What I have been told is another advantage over oral bisphosphonates is the latter stay in the system after cessation but Prolia not so - thus it is possible to avoid ONJ by having major dental work done after the 6 month period of the injection is over as apparently it's bone protective effect exits quickly - Hope this makes sense as am not medical
- Oral fosamax again not that readily available either. It needs the inclusion of breast cancer treatments as a reason for prescribing I believe.
https://m.pbs.gov.au/medicine/item/8511Y.html - Understand @primek as they caused problems for me so ceased taking them .I have read that Prolia reduces bc recurrence significantly and even suggestion that bc patients should be given it regardless of T score .I can access it on PBS at $38 due to a rib fracture but am sad that other bc ladies need to pay $275 esp as I gather bone density is compromised not only by chemo but further for er+ ladies on aromatase inhibitors . Why do bc ladies have to wait for a painful fracture to avail themselves of something that can not only prevent it but reduce the risk of bc recurrence?
