The information available on the Breast Cancer Network Australia website is not medical advice and is provided for information purposes only. It should not be viewed as a replacement for a consultation with a qualified medical professional. Our website is designed to offer information and support to the general public. Be aware that we do not provide any medical advice, and for medical advice we recommend you speak to a qualified medical professional or doctor. 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on PBS, very few will get it.","id":"message:37087","revisionNum":1,"repliesCount":11,"author":{"__ref":"User:user:14227"},"depth":0,"hasGivenKudo":false,"board":{"__ref":"Forum:board:living-with-metastatic-breast-cancer"},"conversation":{"__ref":"Conversation:conversation:37087"},"readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:37087"},"body@stripHtml({\"truncateLength\":200})":" I logged in today to share a couple of community\nservices I have been using in my area and was deeply concerned about the tone\nof conversation coming from disgruntled members surrounding the availabi...","body@stringLength":"4111","rawBody":"
I logged in today to share a couple of community\nservices I have been using in my area and was deeply concerned about the tone\nof conversation coming from disgruntled members surrounding the availability of\na new CDK\ninhibitors Ribociclib (Kisqali) on the PBS. I am dismayed as I do\nnot believe BCNA has mislead anyone. It\nis an accomplishment to get any drug up onto the Pharmaceutical Benefits Scheme\nwho are not transparent, so it’s very hard to gauge what, if any progress is\nbeing made. BCNA informs, empowers,\nrepresents and links together people whose lives have been affected by Breast\nCancer. Their existence is for their\nmembers and as a Consumer Representative, I have seen first hand the work they\nput into advocating on our behalf, working with stakeholders such as politicians,\npharmaceutical companies, health bureaurcracies, cancer medical services and other\ngroups and who have vested interest in our Health, TGA and PBS systems, it’s no\nwalk in the park. Please don’t disparage\nor undermine the work that is being done in this area for our benefit.
\n\n
I agree that the scope for the use of this drug\nis very limited, and this is disappointing, but it’s a start, not the finish. Frankly we are at the whim of pharmaceutical\ncompanies who determine if our market is worth investing in and there also has\nto be political will, this is where BCNA\ncan have an influence but there are no guarantees. I feel BCNA has been attacked because they\nare a soft target. Its not so easy to\nget a voice elsewhere, so please don’t attack an organisation that has your\nconcerns at heart.
\n\n
In 2015 there was a Senate\nInquiry to consider the availability of new,\ninnovative and specialist cancer drugs in Australia, including \"the timing\nand affordability of access for patients\". \nBCNA’s interest was to advocate for Kadcyla and Perjeta drugs to go onto the PBS. A highlight for me as a cancer survivor, was\npersonally presenting the case for Kadcyla to go onto the PBS. This process took 4 years!
\n\n
\n\n
Australia\nis behind in the adoption of medical technologies, and there are a growing\nnumber of patients unable to access some medicines compared with their overseas\ncounterparts. Fundamental reform to the way cancer drugs\nare made available requires broad consultation with stakeholders and society. BCNA gives us a voice.
\n\n
Living\nfor 12 years with metastatic cancer, I do empathise with the group who are struggling\nto get what they need to live. We do\noften look down the barrel of a gun but it’s nobody’s fault that we have metastatic\ncancer. I too have had times when I was going\nto die but I am a strong advocate for myself and others. We need BCNA to be with us to amplify our voices. Attacking\nBCNA whose existence is to make our lives better, who identifies us as a\ncrucial and integral part of them isn’t the way. Everyone\nis entitled to voice their concern, but I for one know that BCNA will continue to\nfight to get better outcomes for us.
\n\n
In the\nmeantime it’s up to us, through our Oncologist and others to keep ourselves top\nof their mind as its them who are our personal advocates in getting the latest\ntechnology to keep giving us a life.
\n\n
Cancer is just part of my life now, and I always try to have hope. I would like to see a philosophy of “Patient\nCentred Care” but political will has to be there to make this happen. My\nmedical team are doing a fantastic job keeping me well. Nonetheless as I have expressed, there are\nmany areas that need to catch up, so we need to keep the conversation going so\nthe powers that be start listening and make changes to the existing for the\nbetter.
\n\n
I count my blessings\nthat I am still here enjoying life with my family and friends. I want this for other people who need life-changing\ntreatment as I have had.
I logged in today to share a couple of community\nservices I have been using in my area and was deeply concerned about the tone\nof conversation coming from disgruntled members surrounding the availability of\na new CDK\ninhibitors Ribociclib (Kisqali) on the PBS. I am dismayed as I do\nnot believe BCNA has mislead anyone. It\nis an accomplishment to get any drug up onto the Pharmaceutical Benefits Scheme\nwho are not transparent, so it’s very hard to gauge what, if any progress is\nbeing made. BCNA informs, empowers,\nrepresents and links together people whose lives have been affected by Breast\nCancer. Their existence is for their\nmembers and as a Consumer Representative, I have seen first hand the work they\nput into advocating on our behalf, working with stakeholders such as politicians,\npharmaceutical companies, health bureaurcracies, cancer medical services and other\ngroups and who have vested interest in our Health, TGA and PBS systems, it’s no\nwalk in the park. Please don’t disparage\nor undermine the work that is being done in this area for our benefit.
\n\n
I agree that the scope for the use of this drug\nis very limited, and this is disappointing, but it’s a start, not the finish. Frankly we are at the whim of pharmaceutical\ncompanies who determine if our market is worth investing in and there also has\nto be political will, this is where BCNA\ncan have an influence but there are no guarantees. I feel BCNA has been attacked because they\nare a soft target. Its not so easy to\nget a voice elsewhere, so please don’t attack an organisation that has your\nconcerns at heart.
\n\n
In 2015 there was a Senate\nInquiry to consider the availability of new,\ninnovative and specialist cancer drugs in Australia, including \"the timing\nand affordability of access for patients\". \nBCNA’s interest was to advocate for Kadcyla and Perjeta drugs to go onto the PBS. A highlight for me as a cancer survivor, was\npersonally presenting the case for Kadcyla to go onto the PBS. This process took 4 years!
\n\n
\n\n
Australia\nis behind in the adoption of medical technologies, and there are a growing\nnumber of patients unable to access some medicines compared with their overseas\ncounterparts. Fundamental reform to the way cancer drugs\nare made available requires broad consultation with stakeholders and society. BCNA gives us a voice.
\n\n
Living\nfor 12 years with metastatic cancer, I do empathise with the group who are struggling\nto get what they need to live. We do\noften look down the barrel of a gun but it’s nobody’s fault that we have metastatic\ncancer. I too have had times when I was going\nto die but I am a strong advocate for myself and others. We need BCNA to be with us to amplify our voices. Attacking\nBCNA whose existence is to make our lives better, who identifies us as a\ncrucial and integral part of them isn’t the way. Everyone\nis entitled to voice their concern, but I for one know that BCNA will continue to\nfight to get better outcomes for us.
\n\n
In the\nmeantime it’s up to us, through our Oncologist and others to keep ourselves top\nof their mind as its them who are our personal advocates in getting the latest\ntechnology to keep giving us a life.
\n\n
Cancer is just part of my life now, and I always try to have hope. I would like to see a philosophy of “Patient\nCentred Care” but political will has to be there to make this happen. My\nmedical team are doing a fantastic job keeping me well. Nonetheless as I have expressed, there are\nmany areas that need to catch up, so we need to keep the conversation going so\nthe powers that be start listening and make changes to the existing for the\nbetter.
\n\n
I count my blessings\nthat I am still here enjoying life with my family and friends. I want this for other people who need life-changing\ntreatment as I have had.
Karen C
\n\n
"},"Conversation:conversation:37087":{"__typename":"Conversation","id":"conversation:37087","solved":false,"topic":{"__ref":"ForumTopicMessage:message:37087"},"lastPostingActivityTime":"2018-07-19T16:12:58.000-07:00","lastPostTime":"2018-07-19T16:12:58.000-07:00","unreadReplyCount":11,"isSubscribed":false},"ModerationData:moderation_data:37087":{"__typename":"ModerationData","id":"moderation_data:37087","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:37087_1":{"__typename":"Revision","id":"revision:37087_1","lastEditTime":"2018-07-08T17:53:10.000-07:00"},"ForumReplyMessage:message:37092":{"__typename":"ForumReplyMessage","id":"message:37092","conversation":{"__ref":"Conversation:conversation:37087"},"author":{"__ref":"User:user:15050"},"revisionNum":1,"uid":37092,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:living-with-metastatic-breast-cancer"},"subject":"Re: Kisqali on PBS, very few will get it.","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:37092"},"parent":{"__ref":"ForumTopicMessage:message:37087"},"body":"To all the computer-literate ladies out there - Help ! What and where is the site where people start petitions ?","body@stringLength":"117","rawBody":"To all the computer-literate ladies out there - Help ! What and where is the site where people start petitions ?","kudosSumWeight":0,"repliesCount":0,"postTime":"2018-07-08T22:25:39.000-07:00","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:37092_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","isEscalated":null,"placeholder":false,"originalMessageForPlaceholder":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[],"replies":{"__typename":"MessageConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}}},"CachedAsset:theme:customTheme1-1744167880929":{"__typename":"CachedAsset","id":"theme:customTheme1-1744167880929","value":{"id":"customTheme1","animation":{"fast":"150ms","normal":"250ms","slow":"500ms","slowest":"750ms","function":"cubic-bezier(0.07, 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