BCNA calling out the government - failing to protect Australians from genetic discrimination
Breast Cancer Network Australia (BCNA) is calling out the government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework. Cancer Australia launched the National Framework for Genomics in Cancer Control this morning, which aims to integrate genomics into routine cancer care, improving outcomes through personalised medicine. BCNA welcomes the framework but condemns the Australian Government’s failure to follow through on its commitment to legislate a full ban on genetic discrimination in life insurance, a critical reform to ensure all Australians can access genetic testing without fear of financial repercussions. “The Government cannot claim progress in genomics while failing to uphold the fundamental rights of those affected by breast cancer and other genetic conditions,” BCNA Director of Policy, Advocacy & Support Services Vicki Durston says. “If genomic medicine is the future, then protections against genetic discrimination must be part of that future. “No more excuses. There must be action before an election is called or Australians are at unacceptable risk.” BCNA calls on the Government to immediately prioritise its promise to introduce a full ban on genetic discrimination in life insurance, ensuring all Australians can access genomic testing without fear. Read full media release via link BCNA calls out government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework (Media Release) Take action now! ✔️ Share this post to spread the word ✔️ Contact your local MP using the form link Email your MP about delays in banning genetic discrimination | DELAYS TO BANNING GENETIC DISCRIMINATION IN AUSTRALIA
FOXA1 gene shows resistance to AIs .... genomic mutation
In September 3, 2020 a study published by Memorial Sloan Kettering Cancer Center indicates how genomic mutations in FOXA1 can cause cancer drug resistance to AIs. FOXA1 might be one to be added for Genomic testing here in Aus - no point being on AIs if the gene is resistant to it! https://www.mskcc.org/news/mutations-same-gene-create-different-paths-breast-cancer-drug-resistance?fbclid=IwAR0jIFetNV-6ulvLhDYnQNViwN3hoYsSdmgFQxt1MzTxaknVSHGlD_n7O_c Technically your tumour samples should be kept for some years - so they SHOULD be able to be sent for testing/Oncotyping ..... (my husband's first tumours from 2010 had genome sequencing done earlier this year, as well as those from the biopsies taken in Jan - to see if they were the same cancer & whether more modern treatments were available ....)Genomic Testing should be the FIRST test, not the LAST!
When we had our first meeting with Hubby's Onc, she was very keen for us to have Next Generation Sequencing done (in the USA) to see if there are any mutations within his tumours that may respond to specific medications (that may or may not be available in Australia.) In the USA, it is done pretty well routinely in a lot of the cancer centres - but many of the drugs used over there, have not been approved for use in Australia, so are not even allowed to be imported, even if you WANTED to try them as an option! She said that eventually, getting this test done FIRST will be 'the norm' ..... but as of now - it is not 'readily available' to everyone, with out paying a fairly high price, in our case, it was $3000. In the Sunday Telegraph this weekend, there was a 3 page article on women with metastatic breast cancers who are NOT able to access some life saving (or life prolonging) immunotherapy drugs on PBS, as they've not been approved for Breast Cancer - but have been for Lung cancer and Melanomas (eg Keytruda.). If you know anyone with a copy of the paper - it is well worth a read too. There was a separate article on the Garvan Institute in Sydney who DO do genomic testing - and is an interesting read. (Sorry it is a bit fuzzy ..... but I hope you can read it.) They were conducting trials last year whereby they made the testing available either free or a nominal $350, which enabled a lot of patients to be tested, who otherwise would not have been able to afford it. The trial ended earlier this year. Our Onc had submitted some of her patients for it. My husband's genomic tests came back showing 2 drugs may be helpful with his treatment that are currently in use in the USA - but sadly they are not approved in Australia, so we are unable to access them for his treatment. :( IF the Gov comes to the party and makes this testing more available to cancer patients - it will be fantastic, as new Clinical Trials that should include BC patients - should spring up everywhere! You can contact him on: d.thomas@garvan.org.au I contacted him and this is part of his reply: Omico has enabled more than 3,000 Australians with incurable cancers, and no other standard options, to access genomic screening, and about one in five of those to access matched therapy. We know from our data, and that being produced internationally, that this translates into clinical benefits, including longer life. But we have resources currently only for 2-4% of those who could benefit from screening. We know we have to change that. We are trying to develop a private-public partnership between government and the pharmaceutical sector. We ask the government to provide genomic screening for all cancer patients with incurable disease, and we ask industry to bring more cancer trials of new drugs to Australia. In this way, we solve the major problem, which is not screening, it is treatment. This is no doubt something very clear to you. If we can bring not only the tests but also matched treatments, without causing people out of pocket expenses, we have a sustainable model for precision oncology for Australians today. Despite being non-profit, Omico has worked very hard at developing industry relationships, primarily so we can develop new trials for our patients. Our experience has been overwhelmingly positive. This leads us to believe that we can create the PPP described above. We have developed and submitted a business proposal to the Federal government, based on economic modelling and discussions with industry. We hope that they will see that the PPP will allow the commonwealth to take the bold step to provide all Australians with genomic testing and matched therapy, without breaking the bank. Health and the economy are seen as polar opposites—but that isn’t necessarily the case. Our modelling indicates that we not only screen 80,000 Australians, and save almost 3,000 years of life for cancer patients, but we create 3,000 new jobs in the high tech sector, and inject $2.8B of value into the economy from foreign direct investment or saved health care costs. https://www.omico.com.au/
