oncologists so worried about cost of treatment that they are not giving options to patients

TripleNegMamaTripleNegMama Member Posts: 47
Did you see the story on Susie Krimmer in the Australian.  It makes me sooooo mad that there is testing available that might provide treatment options and patients don't even know about it because the oncologists are so worried about the cost of treatment that they are not even explaining the testing or possible treatment options.  If it takes $2,000 for the test and $20,000 for the treatment hell if it even cost $200,000 for the treatment then let me a least know about it. I know for some people that don't have the funds this would be heart breaking - but I have the funds - why should my kids go through the heartbreak of loosing me if there is an option available just because the oncologist will be a bit uncomfortable talking about money.  I can find that sort of money if it means that my kids don't have to go through the trauma of having me die while my youngest is still in primary school.  I know sometimes you might pay all that money and there is still no options available - but at least give me the choice.  BCNA what can we do to make it mandatory for oncologists to explain the testing genomic testing available and offer it to all patients????

Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 2,994
    Shame on them - all options should be put on the table, so the patient can make an informed decision.  

    Is there any way of saving the link as a PDF, @TripleNegMama ?  Or just copy & paste the editorial?  You need to be subscribed to be able to read it (as so many of the NewsPaper Websites are doing now, even our local one on FB - it gives you a link to entice them to the page, then you can't bloody read it!)
  • TripleNegMamaTripleNegMama Member Posts: 47
    Oh I didn't realise that the link wouldn't work - very frustrating

    Way of the future’ in cancer fight is here, but only for the lucky few
    When Susie Krimmer learned that the metastatic cancer that started as a spot on her right breast had spread from the brain to her liver, she cried and cried. As a nurse, she knew all too well what it meant.
    Then she remembered a conversation from her life before cancer: her friends had been talking about molecular medicine and the amazing results being achieved with gene treatments for  patients who had run out of  options. With nothing to lose, Ms Krimmer, 51, resolved to give it a go.
    It turned out to be the start of a rollercoaster ride. The oncologist she initially consulted told her: “That’s the way of the future. It can’t help you.”
    But luckily for Ms Krimmer, she lived at Bulimba, on Brisbane’s southside, in the catchment for the public Princess Alexandra Hospit al and a genomic testing program run by medical scientist Matt Brown at the Australian Translational  Genomics Centre.
    The future had arrived — and it saved her life. At a cost of $2000, her genetic profile was sequenced and compared to that of the cancer to determine what was driving the disease. Again, she was in luck.
    It turned out she had a genetic mutation that could be targeted by an immuno suppressant drug called Everolimus, used usually to prevent transplanted organs being rejected or to treat kidney cancer. Better still, pricey Everolimus was listed on the government-sub sidised Pharmaceutical Benefits Scheme.
    “It was the best Christmas present I’ve ever had,” Ms Krimmer said yesterday, a picture of health. “I feel fantastic. I am making plans and … I’m excited about life again. I am just so incredibly
    By JAMIE WALKER, ASSOCIATE EDITOR EXCLUSIVE 11:00PM MARCH 1, 2019 • H 9 COMMENTS
    12/04/2019 ‘Way of the future’ in cancer fight is here, but only for the lucky few
    grateful.”
    If this is a success story, it’s also a cautionary one for the majority of cancer patients who have no access to programs such as gene sequencing through the ATGC.
    The 500 patients who were screened by Professor Brown and his team last year represented a fraction of the 134,000 Australians who will contract cancer this year, making it the nation’s second-biggest killer after heart disease. But early results make a compelling case for the scope to be widened.
    Professor Brown said 60 per cent of blood-cancer patients and 40 per cent of those with lung cancer  were found to have “clinic ally actionable” biomarkers that would not have been picked up by standard pathology testing.
    Cancer is fundamentally a geneti c disease — caused by a short-circuit in the DNA of cells that causes them to multiply wildly, causing  tumours or eruptions of abnormal white cells in blood.
    About a third of lung cancer patient s are likely to respond to these new-generation drugs that turn the body’s immune system against cancer.
    “Those patients could all have gone into clinical trials that are running on the east coast of Australia,” said Professor Brown, the director of genomics at the Queensland University of Technology. “Some of them … have missed out on a cure because they have not had that testing done.”
    He warned that Australia was trailing other developed countries. Britain’s National Health Service had a five-year plan to systematic ally grow genomic-based personalised medicine for cancer patients.
    Here, the experience had been more hit and miss — where people lived, their financial means and the type of cancer determining access , not necessarily need. Had Ms Krimmer lived on the other side of Brisbane River, she would have been under the state government’s North Metro Health and Hospital Service and ineligible for free molecular testing. She could have paid the cost out of pocket, but her doctors would have had to be on board, and not all were.
    Then there was the cost of the drugs. If they were not on the PBS or available through compassionate access or a clinical trial, the cost could run to tens or even hundreds of thousands of dollars.
    12/04/2019 ‘Way of the future’ in cancer fight is here, but only for the lucky few
    A survey of 240 cancer physic ians in Queensland by Professor Brown’s team found that, on average, these oncologists and other specialists each ordered just 10 genomic  tests a year.
    “These are people who see hundreds, even thousands, of cancer patients a year,” Professor Brown said. “So there is a huge issue with the under-take-up. Partly it is awareness … the current medical workforce is not familiar with it … and, significantly, it’s funding.”
    David Thomas, of Sydney’s Garvan Institute of Medical  Research, said that doctors were uncomfortable with exposing patients to out-of-pocket costs when the benefits of genomic tests were not guaranteed. “There is nothing crueller than to tell a patient to have a test which suggests a treatment that they can’t access without selling their home,” he said.

  • arpiearpie Mid North Coast, NSWMember Posts: 2,994
    WOW!  What a wonderful result for her, @TripleNegMama   Definitely worth the $2000!  Small price to pay, really.

    Will you able to get yours done?

  • TripleNegMamaTripleNegMama Member Posts: 47
    I will be discussing with oncologist on Monday - I have had foundation one testing done by sending a tumour sample to the US a couple of years ago - cost $4,000 - so I will be checking if this is just an Australian version of that or if it looks at more things - I'm just cross that you have to know to ask for this stuff and oncologists don't bring it up.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,315
    Immunotherapy as a cancer treatment has just been introduced to our local private hospital cancer ward.
    There is always an option to cancer treatments although oncologists are not allowed to tell of herbal ones which are not sanctioned by the board of doctors. 
  • SilbaSilba SydneyMember Posts: 90
    It is a  pity that unfortunately  for the majority of us financially this test are out of reach but if you have the funds why not try ?
    I asked my oncologist about future treatments  and costs, he was upfront and suggested that having a nest egg of  $50,000 around would be a good idea, I have a long way to go from my $112.. left in my savings after 15 months of treatment and no work or help from government agencies.
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