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
- @Primek oral tablets are NOT an option and is why I have been prescribed Prolia since finishing Chemo in December 2015. My Oncologist even now has said Prolia is it, there is nothing equivalent on the market in oral form that would benefit me.
@Romla that was fantastic that email you sent to Amgen, from I also researched too, on the PBS it states that they don't have enough indication in relation to basically women and Breast Cancer and the need for Prolia uuugh.
ON the up side, the Ombudsman must have kicked my Health Funds butt as I woke to an email that the claim had been processed....but before I get too excited I think it's only like $50 so not impressed. I will see what it is but will be changing funds they were so unprofessional it was a joke! - Oral bisphosphonates are on PBS for osteoporosis with T score being sole criteria . I tried two different ones pre- bc. The first one caused an oesophageal ulcer as one needs to be fully upright for at least 30 minutes after ingestion. I was prescribed another one but later needed a tooth extraction whereupon only Prof Alastair Goss would take the risk after crosslaps due to fear of osteonecrosis of the jaw and being sued. Oral bisphosphonates stay in the body indefinitely Prolia exits rapidly at the end of 6 months enabling opportunity for serious dental between injections without risk of onj. Two of the oncs suggested Prolia has benefits also for prevention of bc recurrence am not sure bisphosphonates afford the same.I wrote to the distributor Agen about it at the suggestion of the AMA and here is their response and a copy of my original email to them .
"Thank you for your email. Amgen has conducted Prolia® (denosumab) clinical trials for a number of indications, including in patients with non-metastatic breast cancer receiving hormone therapy. However, at present, Prolia is unapproved for this indication in Australia.
Whilst we obtained registration and reimbursement in some of these patient populations, the pathways to registration and subsequent reimbursement can be quite complex. It requires extensive negotiations with government departments, and the exact criteria for reimbursement is not a decision that can be made solely by the manufacturer of the medicine.
We do appreciate your concerns regarding the issue, and the time taken to write to us. Additionally, I have passed your email on to the appropriate internal departments for their reference.
If you have any additional questions, please do not hesitate to contact the Amgen Australia Medical Information Service on 1800 803 638.
Kind Regards,
Leigh Brown, PhD
Medical Information Manager – JAPAC
"Many women who have estrogen receptor positive breast cancer - the most common form of breast cancer- are prescribed hormone therapy to prevent recurrence .Post- menopausal women are prescribed drugs called Aromatase Inhibitors.Many of these women have also experienced chemotherapy prior to commencement of hormone therapy. Aromatase Inhibitors are taken usually for 5 years and whilst considered highly effective in preventing recurrence of breast cancer do have the side effect of thinning bones and causing fractures. In addition those women who have had chemotherapy prior to commencing Aromatase Inhibitors have lowered bone density at the outset of this treatment due to the chemotherapy .Administration of Denosumab injections(trade name Prolia) six monthly counteracts this effect and in addition further reduces recurrence of breast cancer significantly. http://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-somehttp://www.breastcancer.org/tips/bone_health/breast_cancer Currently Prolia is only available on the PBS to women over 70 or those who have an existing fracture. The cost of Prolia to those unable to access the PBS price is high- $275 for each 6 monthly injection - and difficult for many to afford especially as the costs of breast cancer treatment has already been substantial. Could not women suffering breast cancer who are placed on Aromatase Inhibitors -and at the outset of hormone therapy are osteoporotic as indicated by low T scores also be granted access to Prolia at the PBS price rather than wait to suffer the severe pain of a fracture and in addition receive the benefit of a further reduction in the risk of breast cancer recurrence this drug provides?"
- I think with metstatic disease it is automatically covered to slow down fractures due to the mets. Under a completely different code I woukd say for that. I am pleased with that. @melclarity would oral tablets be more affordable?
- Hey @Wendy55 I think as you are on the Disability Pension is why you get it at the discount rate maybe? or metastatic Breast Cancer? I really don't know. I've had it out extensively with my Oncologist twice now, am incredibly upset and frustrated with the stupid Health Fund I just switched to who do not cover it either. I cannot afford to pay $275 every 6 months for this, ridiculous!!! when treatment caused it. I meet the criteria with Osteoporosis, I even have the reduced height in between vertebrae as specified but I am not over 70. FURIOUS!!! It is discrimination I agree, and with other drugs with this diagnosis why the hell should we be struggling to pay for what is necessary?? Im ready to blow a gasket!!
- Hi ladies, nI have mets in my liver and spine and have been on denosunab since diagnosis, one injection every 4 weeks, now every six weeks,I pay $3.60 as I am on a disability pension, I am not sure why you cannot access this, is it because I have metastatic breast cancer, I have never had a fracture and my last bone density scan showed I have osteopenia, it seems very unfair that I can access this and many others cannot,my diagnosis was 4 years ago, I did need dental work at one stage and I was taken off denosunab for three months to allow for this, denosunab does stay in the system for a while, I had a blood test taken before the dental work to see how much of the drug was still in my system, has the government drawn a line under who qualifies and who does not, I have this same fight on my hands in regards to other drugs being available that I cannot access because I do not meet the criteria, Discrimination I say!!!
wendy55 - @iserbrown makes me incredibly cross, I cannot afford it if this is the situation, what was worse was the Health Funds attitude, could careless. Grrr...there was nothing written in their terms and conditions of exclusions, zero! I have written to the Ombudsman, am so over it!!! Why isn't this ON THE PBS!!!! I was so mad Im in nothing but tears over it through frustration of having to take something that was a result of treatment anyway... :'(
- Who the what the! Doesn't it make you cross!
- Well!!!! So I had the injection last week and 5 months ago I switched health funds, to be told today that SORRY!!! we don't cover THAT injection on THAT extras...where it was on the previous fund. FURIOUS!!!!! How on earth do we afford $275 every 6 months...so upset and angry and will now change funds it would seem again!! :'( Melinda
- Or @iserbrown suffer the pain of a fracture which I personally don't recommend.@Cate64 think you may be in that category to get the PBS price as criteria is strict and others are paying $275 an injection
- This is the link for the PBS Criteria for Prolia, it's not open for everyone, the criteria is very strict.
http://www.pbs.gov.au/info/industry/listing/elements/pbac-meetings/psd/2013-07/denosumab
