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Romla's avatar
Romla
Member
8 years ago

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! 


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  • primek's avatar
    primek
    Member
    8 years ago
    @Romla Yes I am aware if the oral tablets but having long term gastritis issues it probably isn't a solution for me. 
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago
    So what is needed is another line within the criteria - reduction in bone density as a result of cancer related treatment.  Yet if your bone density has deterioated through wear and tear resulting in a fracture or you've made it to age 70 all sweet!  Doesn't make sense.

  • Romla's avatar
    Romla
    Member
    8 years ago
    I think govt prefer we use bisphosphonate tablets as are cheaper and do not need as great a subsidy hence less of a drain on the public purse
  • Romla's avatar
    Romla
    Member
    8 years ago
    @primek there are bisphonate tablets like fosamax available on PBS to counter bone loss .I tried 2 types a few years ago one of which caused an ulcer as you need to be very careful taking them - they needed to be taken weekly which is not as convenient as a 6 monthly injection plus have not heard they work together with aromatase inhibitor to reduce risk of recurrence as Prolia they believe does. I think Prolia also builds bone quickly hence recommended for anyone who has had a fracture . 
  • melclarity's avatar
    melclarity
    Member
    8 years ago
    @iserbrown you are absolutely right, 4yrs on Tamoxifen and then I had a recurrence, then Chemo all led to a decline in my bone density and now I have Osteoporosis in my lumbar and neck, I meet the criteria of below -2.5 T Score as my lumbar is -1.9 but I am under 70 and no fractures...Hmmm so no go...ridiculous!
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago
    It doesn't make sense! So you need to have a fracture to qualify for PBS if you're under 70 yet it's probable that it has been accelerated due to chemo! Go figure! 
  • primek's avatar
    primek
    Member
    8 years ago
    I thought the whole point of bone density scan monitoribg is to avoid the fractures. Ridiculous in the extreme that medication cannot be provided at an affordable cost. 
  • melclarity's avatar
    melclarity
    Member
    8 years ago
    Absolutely!!! I'd be struggling if I didn't have the Private Health Cover! 
  • Romla's avatar
    Romla
    Member
    8 years ago
    I am 'lucky' I have had a fracture so access at PBS price and you are lucky enough to have private health insurance which helps but what about the many others that have neither ? Awful
  • melclarity's avatar
    melclarity
    Member
    8 years ago
    @Romla I'm so glad we talked about this again tonight! Very fitting, and at $275 per injection is ridiculous!, I do get back about $150 through Private Health Cover, but thats a far cry from $38 on the PBS. My Oncologist today said today it needs to change, he has so many patients in the same boat!! I'm happy to jump on board and stir the pot too!! with an email :) x Melinda