A couple of weeks ago we sent out a special advocacy edition of the Muster to inform you of the latest submissions to the Pharmaceutical Benefits Advisory Committee (PBAC) for the upcoming November PBAC meeting, they will be considering two submissions relating to myeloma, both of them ‘triplet combinations’ with bortezomib and dexamethasone but for different indications:

  • combination of daratumumab, bortezomib and dexamethasone (at first relapse only)
  • combination of pomalidomide, bortezomib and dexamethasone (at first or subsequent relapses)

Whether you are an individual with myeloma, a carer, a friend or a relative it is essential that the regulators hear the impact myeloma has had on your life and how vitally important it is to you that these combinations be made available on the Pharmaceutical Benefit Scheme (PBS).

Factors to consider expressing if you are a patient are, how you feel about your current treatment, its efficacy and side effects, and any other aspects of your current or previous treatment that have impacted your life.  If you are a carer, a friend or a relative, how has your life been changed by having someone you care about have the disease.  It is important that these comments from the myeloma community are emotive and emphasise why there is the need for these treatment options to become available on the PBS.

Last year Myeloma Australia ran a survey that revealed just how important it is to the myeloma community that new treatments be made available for patients.  From this survey, 85% of participants said that new treatment options would make a significant and beneficial difference to their lives by providing them with a greater hope of a prolonged remission with fewer side effects and hence a better quality of life.  Comments that came from the survey included;

“I have already relapsed from treatment with Lenalidomide and fear that every such relapse brings me one step closer to the end of the road”

“I could hopefully get a treatment with less side effects (currently I have depression coping with the side effects and the illness)”

“My current treatment makes it almost impossible to hold a job down.  My doctor tells me I need a new drug that is approved by the TGA but not on the PBS.  If I could get it, it would change my life but it is unaffordable.  Without it I will probably be forced to quit my job in the near future which I don’t want to do”

“It is so frustrating to see new treatments approved overseas and having to wait years here for approval”

 Please have your say and help advocate for the inclusions of these drugs on the PBS by making comments via one of the following ways before Wednesday October 9th.

The outcomes of the meeting will be available on the PBAC website approximately six weeks after the meeting and we will keep you updated through our e-newsletter The Myeloma Muster.

Should you have any questions please call one of our Myeloma Support Nurses on 1800 693 566 or email nurses@myeloma.org.au

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