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ABC Radio discusses the value we place on life

Kathy_BCNA
Kathy_BCNA Staff, Member Posts: 101
edited August 2013 in Metastatic breast cancer

Following this week's very moving Four Corners program which told the stories of a number of Australians living with advanced cancer and their experiences in accessing high cost drugs not on the PBS, ABC Local Radio is hosting a discussion on the value we place on drugs that may extend life. What price would you be prepared to pay for a drug that may add three months to your life?

BCNA CEO Maxine Morand will be a guest on the program, along with medical oncologist Professor Fran Boyle and Vanessa, a woman who is living with secondary breast cancer. There may also be an opportunity for listeners to call in and share their views.

The program is this Sunday (1 Sept), 10.00pm on your ABC Local Radio station.

There is more information on the News pages of our website.

Kathy

Comments

  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015

    It's is such a difficult question because you always wonder will you be the 1/10 who has a complete response. Will you be the one they write the papers about. Should the government fund such high cost drugs? I'm not so sure but where do you draw the line? How much would I pay? Currently We are paying $1000 a week for a treatment that is not PBS approved - the studies say it may add 3 months more to my life than other therapies tested. (Median survival was 13.1 months vs 10) but progression free survival was less impressive. What if its my one? For now I will be happy if it gives me a little reprieve from my coughing. I would like to see my girls birthdays and Christmas - hell, I'd like to see Gus' birthday next year and then next Christmas too..... I also am willing to pay because right now, I feel too well to do nothing. I do everything I can for myself - I don't believe in passively letting the drugs and doctors fight for me yet I am disheartened to see fellow patients chuff down their ciggies after treatment and scoff their hot chips in the chemo ward - and many will go into remission... I digress. What value life - too difficult to answer. The drug developers have a responsibility here too - to find better bloody drugs for a start. Moreso, the expense is incredible, they are profit driven mostly, they exclude people like me from trials now because I am too heavily pretreated and may make their figures look bad - yet I am the very type of person who both needs to trial and needs compassionate access. The trial process is expensive but it is not transparent. Our Doctors and healthcare teams need to be more vigilant in learning about and providing holistic information. We need to be informed about eating properly, the value of exercise and a peaceful mind. It is not airy fairy. There is evidence but this whole attitude of go and eat and drink, do what you want is not good enough and only adding to the burden of cancer in our society. Oh I've ranted. I want to be well. I am not ready to die. I will not spend the money for my children's education on a few more months but... What if it works for me?

  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015

    It's is such a difficult question because you always wonder will you be the 1/10 who has a complete response. Will you be the one they write the papers about. Should the government fund such high cost drugs? I'm not so sure but where do you draw the line? How much would I pay? Currently We are paying $1000 a week for a treatment that is not PBS approved - the studies say it may add 3 months more to my life than other therapies tested. (Median survival was 13.1 months vs 10) but progression free survival was less impressive. What if its my one? For now I will be happy if it gives me a little reprieve from my coughing. I would like to see my girls birthdays and Christmas - hell, I'd like to see Gus' birthday next year and then next Christmas too..... I also am willing to pay because right now, I feel too well to do nothing. I do everything I can for myself - I don't believe in passively letting the drugs and doctors fight for me yet I am disheartened to see fellow patients chuff down their ciggies after treatment and scoff their hot chips in the chemo ward - and many will go into remission... I digress. What value life - too difficult to answer. The drug developers have a responsibility here too - to find better bloody drugs for a start. Moreso, the expense is incredible, they are profit driven mostly, they exclude people like me from trials now because I am too heavily pretreated and may make their figures look bad - yet I am the very type of person who both needs to trial and needs compassionate access. The trial process is expensive but it is not transparent. Our Doctors and healthcare teams need to be more vigilant in learning about and providing holistic information. We need to be informed about eating properly, the value of exercise and a peaceful mind. It is not airy fairy. There is evidence but this whole attitude of go and eat and drink, do what you want is not good enough and only adding to the burden of cancer in our society. Oh I've ranted. I want to be well. I am not ready to die. I will not spend the money for my children's education on a few more months but... What if it works for me?

  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015

    It's is such a difficult question because you always wonder will you be the 1/10 who has a complete response. Will you be the one they write the papers about. Should the government fund such high cost drugs? I'm not so sure but where do you draw the line? How much would I pay? Currently We are paying $1000 a week for a treatment that is not PBS approved - the studies say it may add 3 months more to my life than other therapies tested. (Median survival was 13.1 months vs 10) but progression free survival was less impressive. What if its my one? For now I will be happy if it gives me a little reprieve from my coughing. I would like to see my girls birthdays and Christmas - hell, I'd like to see Gus' birthday next year and then next Christmas too..... I also am willing to pay because right now, I feel too well to do nothing. I do everything I can for myself - I don't believe in passively letting the drugs and doctors fight for me yet I am disheartened to see fellow patients chuff down their ciggies after treatment and scoff their hot chips in the chemo ward - and many will go into remission... I digress. What value life - too difficult to answer. The drug developers have a responsibility here too - to find better bloody drugs for a start. Moreso, the expense is incredible, they are profit driven mostly, they exclude people like me from trials now because I am too heavily pretreated and may make their figures look bad - yet I am the very type of person who both needs to trial and needs compassionate access. The trial process is expensive but it is not transparent. Our Doctors and healthcare teams need to be more vigilant in learning about and providing holistic information. We need to be informed about eating properly, the value of exercise and a peaceful mind. It is not airy fairy. There is evidence but this whole attitude of go and eat and drink, do what you want is not good enough and only adding to the burden of cancer in our society. Oh I've ranted. I want to be well. I am not ready to die. I will not spend the money for my children's education on a few more months but... What if it works for me?

  • Leonie Moore
    Leonie Moore Member Posts: 1,470
    edited March 2015

    I would not be able to support the purchase of non PBS drugs unless we sold our home.  It would mean a huge change to our lives.  (my husband finds it really difficult to change anything and my life would be a living hell)  Then again when faced with aversity who knows - I want to be around for a long time because I know that my family wants this too.  My father told me a very long time ago (he has been gonee for 17 years) "Where there is life there is hope".  Whilst I am relatively well I am trying to live the most "normal" as I can.  I do try to eat the best that I can (I am gluten, dairy free and have loads of other allergies), drink plenty of good spring water (have a special water cooler installed as well as the filtered fridge dispenser), get as much exercise as my body will tolerate - and beyond and endeavour to get the maximum hours of sleep.  I also do the maintenance stuff with massages and meeting up regularly with good family and friends.  I have learnt many strategies to "deflect" stress.  To live a quiet, peaceful life - sure ????? I need to work to help bring in the extra $$$ $$ so that the extra burden is not all loaded onto my husband who could fall into a heap trying to "hold the finance tree" together.  Sometimes yes it would be good to just run away - that has it's costs too!!!  I look forward to hearing what is going to be said.  XLeonie

  • dawngirl
    dawngirl Member Posts: 130
    edited March 2015
    Amanda, as one of those rare small business people who actually doesn't have a problem with paying taxes, wishes we had an even better universal health care system than we do (in comparison with other developed nations ours is pretty good), I am happy to see my tax dollars going to fund PBS listed drugs with astronomical price tags that may at present extend life by an average for three months. It's only in this way that research will continue to develop in ways we may not be able to envisage right now. It's the only thing we have to extend life, alleviate symptoms, and buy time in case something even better is developed and comes along in time.
    I am shocked to learn that you are not being offered treatment on compassionate grounds, and being excluded from trials on the grounds of having been too
    heavily pretreated. I have no words.
    The problem with the rationing of health services, is that results are discussed in terms of stats; one in ten, two out of five and so on. But behind these figures are people, with families, with friends, some contributing to our world being a better, gentler place. Like you. Your heart shines out in all your writings. I've read every single word you've posted on these pages. I so want you to be one of the ten. And I don't care how many of my tax dollars it would take (if only your meds were one the PBS).
    It's the same argument used with mammograms: no point starting earlier than 50 because too many false positives, too hard to diagnose younger women, not worth the expense vs the lives saved. Tell that to the one in 5 women under 50 who are diagnosed. In my own case, if I'd waited until 50 as advertised, I would have been well on the way to dead by the time it was found instead of it being caught stage 2, grade 2, no node involvement (diagnosed at 47.5 years via mammogram and ultrasound 22 months after my last allegedly clear scans). Is it a waste of money that my life may have been saved? I continued to work through treatment, I continued to contribute as a taxpayer. My husband, Mum and friends certainly think so. And as is to be expected, so do I.
    Like you, I am doing all I can to be well, stay well, and am frustrated by the total lack of interest by my care team as to diet and its role in hopefully keeping a recurrence at bay. I've made it my mission to research this side of things as best I can, but what of people who may not have the skills, or the knowledge base to do this? I can't understand how in 2013 this is not a core part of the treatment plan. And I know these pages are supposed to be a non judgemental space, but just as you can but wonder at the patients in the chemo ward stuffing themselves with hot chips, I wonder at the women on here who encourage themselves to eat whatever they feel like while they're going through chemo. If ever there was a time to feed our body with as much good stuff as possible. I wonder if this one of the factors in my handling chemo relatively well. As tempting as it would have been to deal with it with tim tams, I was fuelling myself with a mainly vegetarian diet; home made, not processed. Yes there were treats, but they were a treat, not a rule. I'm no food angel, far from it, but I sleep a little easier knowing I'm trying to take responsibility for my own health, to do what I can to reduce my risk of recurrence, and it really, really, really pisses me off that this has to be done without the lead or support of my care team. None of us should be left alone on this.
    Ok, so there's my rant for the day (week? month?).
    Amanda, I really hope you've had a special Father's Day with your family today, celebrating the first day of spring while you were at it by taking time out to smell the jasmine.
    May you stay well to see all the life milestones your heart desires.
    xo

  • Laura Crowden
    Laura Crowden Member Posts: 109
    edited March 2015

    Last night's program on ABC Radio's Sunday Night's program. The discussion - A fair price between living and dying - featured BCNA's CEO Maxine Morand, along with medical oncologist (and BCNA board member) Professor Fran Boyle and Vanessa, a BCNA member who is living with secondary breast cancer.

    Listen online via ABC Local Radio.

    Laura

  • MandaMoo
    MandaMoo Member Posts: 500
    edited March 2015

    It was both an interesting and frustrating discussion and showcases what a complicated issue this is.

    It is difficult to hear your life reduced to economics but a neccessary reality.

    My initial frustration with the conversation was the lack of discussion about the effectiveness of these drugs.  The 3 and 4 month survival times were glossed over and herceptin praised extensively.  I too believe we will look back at yervoy and it will be like herceptin for many with melanoma and I find Fran Boyle's argument about investing tomake future gains compelling.  however, I felt that the interview simplified this.  For example, I am a patient, on paper that should have benefitted from herceptin.  I didn't.  It has been preducted by some that the failure rate of herceptin in up to 70% - however, that does not take away from the massive impact it has had on Her2 Positive breast cancer - I simply state it is not so clear cut - the people that benefit long term are few among the larger number of those with this type of disease.  

    If we have to invest to gain, why should the government be responsible for this - shouldn't the developer of the drugs take on some of this, if not all of this responsibility?  I liked the idea of a cancer drugs fund - it sounded like there was promise there.  Another question not asked was, why are these drugs so expensive?  If we need to get these drugs to people to learn about them, then why aren't there more trials.  I cannot access anything now despite my willingness to participate. Instead, I am paying $1000 a week for something that may or may not help - why am I paying, because I feel too good not to, because I would like to have my symptoms reduced, because I still believe there can be the occasional miracle, because I want more time with my children.

    I was pleased to here a caller ask about prevention but this was glossed over.  The Billions of dollars being put into these drugs is phenomenal with little expenditure, relatively to inform people about lifestyle.  Exercise for example can reduce your risk of bc recurrence significantly and costs you nothing!  This is not even promoted by most oncologists and it is as effective for some as these expensive drugs are.

    So I guess it's just all frustrating.  As an advanced cancer patient, yes, I'd like to help those who come after me, but I actually want some help for myself too - the focus of treatment is really not on me, but those who come after me and that is terribly disconcerting.  

    Eribulen is a drug that was rejected by the PBAC - one of the only drugs tested on heavily pre-treated women to show a signficant survival benefit.  Most trials do not accept heavily pre-treated women because the potential to make the stats look bad is there - so time and time again, the trials are for first line metastatic disease.  In most cases, the women on these trials progress, that is their disease becomes worse - why is there so little trial availabilty for these women?  Because the drug companies need to get their drugs passed through organisations like the FDA and the PBAC and they want to do it quickly to recoup on their investment.  The interest is not in the patient but financial gain.

    Overall, I usually enjoy listening to Fran Boyle - but I was disappointed in her input in this program.  I felt that she simplified advanced BC and overstated the benefits of herceptin - I know she has to know the reality, yes, there are success stories but I'm sure she has seen many patients die this year beause treatment is no longer effective and until they keep accurate statistics about recurrence we will never really know the full story about recurrence and living with advanced disease.  I feel sometimes that oncologists feel small gains are acceptable.  As a patient I'm saying they are not acceptable.  Once again, the bar is set too low.

    A x

  • Tania45
    Tania45 Member Posts: 5
    edited March 2015

    for HER2+ early breast cancers the value our doctors place on our life is $50k annual cost of herceptin NHMRC recommends NOT to spend if your tumour is under 5mm. That is despite that:

    http://www.mdanderson.org/newsroom/news-releases/2008/early-stage-her2-positive-breast-cancer-patients-at-increased-risk-of-recurrence.html

    I'm the one how will lose my life in a year or so (good case scenario) because when I was diagnosed with HER2+ cancer and 6mm by 1.9mm tumour was removed, someone decided behind my back and w/o sharing with me the reasoning, that it is more important to classify this tumour as 1.9mm in depth penetration, rather than maximum 6mm extend and that the patient will be fine with radiation course and subsequent annual monitoring by mammogram.

    another measure of value for our lives is  $300 cost of breast MRI i was denied by my surgeon and sent to do mammogram. which was clean just 3 month before i was diagnosed with metastatic cancer and 3 lesions of 1cm each were deteced by ultra/sound and MRI in my breast. Mammogram was still clear, just as it was clear in 2009 when i first complained on breast problem, then in 2010 when my complain got me to dermathologist and skin biopsy, confirming breast cancer. $300  MRI stopped my doctor to refer me to this, even when i was quite prepared to pay it on non-rebatable basis.  Why would doctor insist on using mammogram having a history of failure to detect cancer - beats me. Did not want to bother, did not want to use expensive diagnostic. I was not worthy of $300 and his time to think over it.

    I estimate that my treatment for stage 4 cancer now costs to PBS and Medicare in excess of $150k. it also costs me some pretty money too, all out of pocket, gaps, PBS medications.