Our 31st anniversary present

loveWe received a wonderful wedding anniversary present this morning—yesterday’s CT scan showed that I’m still NED! There is no evidence of cancer in my body. I don’t know why things have been going so well for me, especially when cancer destroys the lives of so many, but I’m very thankful to God. It is now over 18 months that I’ve been NED.

Do I have to continue with the chemo? Yes. Can I take a break? Yes. My oncologist was happy with the idea of me skipping two treatments over the summer. That could mean I get eight weeks in a row without the awful side effects of chemo. Awesome :) We’ll need to make a decision about exactly what to do, but I’m looking forward to a bit of a break.

It’s fair to say that I have a bit of a spring in my step today. I am so appreciative to God for his loving kindness.

Posted in Journey with Cancer | 4 Comments

Marking a milestone

threeToday marks a significant milestone for me. Three years ago I was admitted to hospital with cancer and, within days, a year seemed like an eternity. Now three years, two operations, 50 cycles of chemotherapy, God’s kindness, and a lot of love from a lot of people, and I’m still here—thank God!

And thank you! For your prayers, your visits, your emails, your phone calls, your messages, your meals, your financial help, our walks, the words with friends, the motorbikes, the holidays, your feedback, your encouragement, your wisdom, your nursing, your doctoring, your acupuncture, your physio, the rugby, the camping, the fishing, the reading, the playing…

I thank God for my life! And I thank him for the solid hope of life to come!

Posted in Journey with Cancer | 8 Comments

The value of a life

I’ve written recently about our desire to see Crizotnib on the Pharmaceutical Benefits Scheme (PBS) in Australia as soon as possible. This decision must be made by the Pharmaceutical Benefits Advisory Committee (PBAC) who meet three times each year, in March, July, and November.

The PBAC is an independent expert body appointed by the Australian Government. Members include doctors, health professionals, health economists and consumer representatives. Its primary role is to recommend new medicines for listing on the PBS. No new medicine can be listed unless the committee makes a positive recommendation. When recommending a medicine for listing, the PBAC takes into account the medical conditions for which the medicine was registered for use in Australia, its clinical effectiveness, safety and cost-effectiveness (‘value for money’) compared with other treatments.

There are real difficulties knowing how to measure cost-effectiveness. The temptation is that a an expensive drug that helps a small number of patients, which is not guaranteed to be curative, will quickly be considered non-cost effective. However, when you factor in that the person or the government might be spending similar sums on other treatment; that the targeted therapy may have better medical outcomes; that it may introduce a much improved quality of life; that it may enable the patient to return to work and not experience the financial and personal costs of joblessness; and more… the equation is not simple.

And another important factor, and I do not know if this is considered by the PBAC or not—if a drug enables the person to live an extra six months, or six years, or whatever, with their family, friends, and community, isn’t this worth something. I know it is to me, and my wife, and my children, and my grandchild, and my friends, and my church, and a bunch of others.

I’ve recently met up with people from Rare Cancers Australia. They are doing a great work of helping to support people who cannot afford the treatments they need. This month they have launched a campaign called Sick or Treat. Please take a look and see if you might be able to help.

anitaPlease also watch this clip from the Today Show. Anita has the same cancer and mutation as me, and it is excellent that this is getting publicity. If you feel like lobbying the PBAC, please do. If you pray, please ask God that they will approve this drug and many others like it.

Posted in Journey with Cancer | 1 Comment

The morality of God in the Old Testament

Layout_GenesisHow are we to understand the Israelites being commanded to wipe out all the Canaanites in Deuteronomy and Joshua? What do we make of the various Psalms that call down curses on the enemies of the writers and God? Perhaps, like me you are troubled by these things (and others) in the Bible. Atheists, such as Richard Dawkins, Daniel Dennett, Christopher Hitchens, and Sam Harris, point to these things as evidence for the moral corruption of God (who they believe is really a fiction). Christians come under attack for their beliefs in a God, whom some describe as a moral monster. Some would say how can Christians criticise the recent actions of the IS in Iraq or Syria, when the Old Testament provides evidence of God’s people doing similar things, and at the behest of God?

Let me say that this isn’t really the atheist’s problem—this is a problem that the Jews and the Christians need to deal with. For the atheist, the problem is not with God, for he/she/it doesn’t actually exist, but with the people who claim to believe in God. Their criticism is fundamentally toward religious people justifying their immoral behaviours in the name of an imaginary divine being. However, for the Christian who believes that God is real, that he has revealed himself to people, and that he is involved in human history—there are real issues to consider when it comes to trusting that God is morally pure. This is an issue that I’m keen to explore further.

In considering this matter, I’ve recently read a brief book by G.K. Beale, called The morality of God in the Old Testament. The book focuses on the commands of God to destroy every man, woman and child of the Canaanites (e.g.. Deuteronomy 20:10-18) and also on the imprecatory Psalms (e.g.. Psalms 7; 35; 55; 58; 68; 79; 109; 137) which call upon God to judge and destroy his enemies.

Beale explores various proposed solutions to deal with the difficulties raised by these passages. First, he describes how people argue that wartime ethics differ from peacetime ethics. While this may be true, it doesn’t account for the commands to kill non-combatants. Secondly, he explores the suggestion that the command to kill women and children is not meant to be taken literally, but is a metaphoric way of describing a total victory over the Canaanites. Beale demonstrates that while there may be something in both these suggestions, neither adequately explain the texts.

Instead Beale offers a fivefold approach to engaging with these issues. His approach gives important nuance and perspective to interacting with the difficult moral issues of the Old Testament.

  1. God’s wiping out the wicked Canaanites as a demonstration of his justice;
  2. God’s extermination of the Canaanites as a purifying of uncleanness of the Promised Land as an Edenic sanctuary;
  3. God’s self-sufficiency and independence from creation;
  4. suspension of ethical obligation by typology and intrusion of final judgment;
  5. suspension of the law of neighbour love. (p33)

Beale argues that we need to recognise the uniqueness of the Canaan episode. It does not offer a paradigm for continued activity in the Old Testament, let alone the New Testament. Instead, it should be seen as a once-only, historic actioning of God’s redemption of Israel, as the nation enters into the land of promise. This salvation/judgment event is also to be understood as a type of what is to happen through Christ’s first and second coming.

There is more to his argument than this, but he demonstrates how it is important to allow Scripture to be understood in it’s full biblical context. The critiques of Dawkins and others show absolutely no understanding of the overall shape of the Bible or the saving purposes of God in the Old and New Testaments.

I still find the matters being described troubling, but no more so than the reality of death and the promise of eternal judgment for all who dismiss God. As a Christian I need to grapple with why God allows any suffering, evil or death, and especially with the moral rightness of God judging people for eternity. It’s sobering to remember how much my own moral failings corrupt my ability to recognise what is right and true and perfect. It’s totally presumptuous (and deluded) to think that I can stand morally superior to God, and judge him for his actions. This becomes clearest to me when I am reminded that God loved the world so much, that he sent his only Son, Jesus, to die in our place, so that all who trust in him will not perish but have everlasting life. Such is the moral character of God.

Posted in Books, Christian living | 2 Comments

How can I be sure?

sureJohn Stevens’ little book, How can I be sure? And other questions about doubt, assurance and the Bible is definitely one that I will be recommending to others. It’s clear and simple, without being simplistic; it’s empathic and it uses the Bible well. The author understands that doubt is a complex beast, displayed in a variety of forms, and arising from many different causes. I personally found the book to be inspiring and reassuring. It resonated at times with my experiences of doubt, and some of the causes; and it took me to the places where I’ve found reassurance. While recognising that everyone’s circumstances are different, my prayer is that it will do the same for others. All in all, this compact book is one of the better books on doubt and assurance I’ve read.

If I’m going to engage with a book dealing with these topics, I want to know that the author has a firsthand personal understanding of the matter—and Stevens does. He writes about the impact that his father dying of lung cancer had on his faith. It rocked his world, not simply as an intellectual challenge to the goodness and sovereignty of God, but with personal pain and experience. He took some years to recover from the anguish of this time. Stevens has also explored these issues with many in his church over the past twenty years. This has helped him to grasp the different forms that doubt can take in people’s lives, and to apply his thinking to how the Bible helps each one. The book engages the reader by presenting a mix of personal stories of doubt. People have trouble believing due to their struggles with personal sin, unanswered prayers, the challenge of other religions, relationships with people who have different belief systems, God seemingly remote or out of touch with this modern world, feeling overwhelmed by all around who don’t hold the same beliefs, or questioning whether their ‘conversion experience’ was real. Recognising this complexity is so helpful, and many more scenarios could be added, because doubt is not a one-size-fits-all phenomenon. Doubt could mean a lack of certainty about the future, or a questioning of what we believe, or a lack of assurance, or unbelief. The first three types of doubt will likely be common experience for all Christians and if they are unchecked they can lead to the more dangerous position of unbelief. This book helps us to engage with our doubts as part of the normal experience of living as a Christian.

So if you are reading this book because you are struggling with a problem of doubt at the moment, be encouraged! The fact that you doubt does not mean that you can’t be a Christian. “Doubt” is not the same as “unbelief”. However, you can’t afford to ignore your doubt, treating it complacently or just hoping that it will go away. You must deal with it so that it does not develop into unbelief, and use it as an opportunity to develop a more confident, resilient and mature faith. (p18-19)

Stevens answers the important question “How can I be sure that I’m really a Christian?” by pointing not to us, but to God’s love for us in Jesus. There are dangers in becoming too introspective about this issue. We can end up placing confidence, or lack of, in ourselves rather than the gospel. If we base our assurance on a response we previously made at church, or at a Simply Christianity course, or on a university camp, or an outreach event, this can lead to a misplaced and false assurance. We are not made right with God because of our response, but because of God’s gracious work in Jesus’ death and resurrection on our behalf. For me, who had made decision after decision to become a Christian (again) in my teens, it was realising the truth of Romans 5:8-9 — that Jesus had paid for my sins past, present and future — that led to my assurance before God. While this book generally leads us away from introspection, it does call us to examine the evidence for our lives being changed. The Bible pushes us to look for evidence that our faith is real and we should expect to see our lives changed by the Spirit of God at work within us. On three occasions, Stevens recommends that we keep a spiritual journal to chronicle the evidence of God working in us and changing us. I must admit that I worry a little about this strategy. It’s not that I’m opposed to journalling, it’s more that documenting our experiences will always provide fickle evidence at best. I’d recommend that if we’re going to journal, we spend even more time documenting the promises of God that we discover in  the Bible. God’s promises remain trustworthy, whereas my experiences lead me here and there. If I want clear evidence that God loves me, then I need to look at the cross, not what happened in my life last week or last year. As Martyn Lloyd-Jones describes in his book Spiritual Depression, after looking at Psalm 42-43, we need to spend more time speaking to ourselves (about God), than listening to ourselves (about why God is absent or doesn’t care). The chapter on overcoming doubt is practical and helpful. Stevens recommends the following strategy:

  1. Admit that you are struggling with doubt and seek help.
  2. Come to Jesus for help with your doubt.
  3. Seek the help of mature believers with your doubt.
  4. Identify the root causes of your doubt
    1. Doubt rooted in our bodies: Physical causes of doubt.
    2. Doubt rooted in our minds: Intellectual causes of doubt.
    3. Doubt rooted in our hearts: Experiential and emotional causes of doubt.
    4. Doubt rooted in our spirits: Spiritual causes of doubt.
  5. Addressing the causes of doubt.

In the end, the Christian faith stands or falls on whether Jesus really was the Divine Son of God who took on human flesh, was crucified and rose again after three days. If this really happened, then we can be sure that God exists. We can know what God is like because Jesus fully reveals him to us. We can be sure that the Bible, both Old and New Testament, is true because Jesus tells us so. We can be confident that God is love, and that he will accomplish his good purposes for his people. We can trust that our sufferings are part of his good plan for us, even though we may not understand how, because we can see that Jesus entered into glorious new life after suffering on the cross. We can trust that Jesus will return to bring true justice and remake our broken world. If we can be confident about Jesus, then this is the basis from which we can address all our doubts. (p71-72)

This book will point you to Jesus as the basis of your assurance and the antidote to your doubts. Any book that does this is worth a read, I reckon.

Posted in Books, Christian living, Pastoral ministry | 1 Comment

Be the best bad presenter ever

I’m a regular preacher (again) and I’ve preached my fair share of dud sermons. Mind you, I’ve also listened to plenty of dud talks from others. What gets me most is when there’s a disconnect between the message and the medium, or the message and the messenger. It’s difficult to listen to an important message that completely lacks passion. It’s frustrating to have to fight to understand where the talk is going, when there doesn’t seem to be any logic or coherence to the message. It’s deadening to listen to the speaker drone on and on without changing pitch or tone or volume or speed.

badpresenterBe the best bad presenter ever: break the rules, make mistakes, and win them over by Karen Hough caught my attention. It sounded like a book that might have something useful to say to preachers and presenters alike… and it does. Hough critiques 14 rules that are commonly given to public speakers and shows how they can actually get in the way of good communication. She speaks of the respected rules for speaking and why you should break them—mercilessly. This book is built on the conviction that you are part of the message. People want to connect with you, not a proxy of you. If they know you care deeply about your message then they will forgive your clumsiness and mistakes. Passion overrides technique.

I will list the rules Hough says to break, and follow each with the alternative:

  1. Your purpose is to give a good presentation
    “Good” is to a presentation like “fine” is to a compliment. Your purpose is to make something happen!
    What purpose does your presentation serve? Having a searingly clear purpose will filter out all the silt from your presentation. Think of the purpose as the destination—the outcome of your presentation. What do you want to have happen? What change will come from you taking the time to talk to these people? (p15)
  2. Give informational presentations
    That’s about as exciting as watching grass grow. Take action!
    Remove inform from your list of acceptable actions. Replace it with words such as motivate, convince, teach, inspire, anger, entertain, invigorate.
  3. Practice in front of a mirror
    Mirrors are just a one person show. Practice often, out loud, and on your feet.
    Why would you want to submit your audience, and that critical speech, to your first unpleasant dry run?” (p32-33)
  4. Picture the audience in the underwear
    Stupid visuals distance you. Connect with your audience. Who really wants to visualise Bob from accounting in his underwear?
    You’re not there to impress your audience with how remarkable you are; you’re there to communicate with them. Become more “audience involved” and less “me involved”. Self-consciousness results from too much attention to yourself, which puts others—your audience—in the background and you in the front. (p42)
  5. Open with your introduction and close with questions
    Like a dreaded college lecturer. Bookends will hook your audience and send them out singing.
    People form opinions of others within the first seven to thirty seconds, so a hook must grab people’s attention right away. Give people a reason to listen. Use the power of repetition to teach your main points. Finish with what you want your audience to take away. The risk of finishing with questions is they can take the audience anywhere and completely away from your talk. If you take questions have a closer afterwards.
  6. You either have confidence or you don’t
    That’s bogus. You can teach your body confidence. And your body is your most powerful tool.
    Hough comments on research that shows how by changing our bodies we control chemicals that affect our confidence. Body language and tone of voice are both critical features of good communication. (By the way, this is why email is such a poor communication tool for influencing others. It has neither body language or tone of voice.)
  7. What you say is most important
    It’s how you say it that matters.
    I don’t agree with this contrast. It’s a ‘both/and’ rather than an ‘either/or’. Truth matters, but so does how we communicate truth. Hough talks about the tools of articulation, volume, pitch, timbre, speed, connection to breath, and silence.
  8. Scan the back wall to simulate eye contact
    Scanning is fake.
    Far better to plant a friend in the audience and make regular contact with them—especially if they agree to smile at you regularly!
  9. Stand behind the podium
    Podiums are really, really awful.
    Body language is important. People want to see you, not a piece of furniture, so step aside and feel free to move around.
  10. Explain each topic
    Tell stories! Stories are the most powerful way to share information.
    Why does this remind me of my good friend Chappo! He was the master story teller, and as he did he explained his topics better than most. People like to hear about people rather than concepts. When it comes to preaching, stories are an excellent way of showing how it all works.
  11. Have all your bullets on PowerPoint slides
    Bullets are so called because they kill good presentations. PowerPoint numbs the brain. You are the presentation.
    Personally, I loved this chapter! I’m over PowerPoint. PowerPoint is a scourge—on our ability to communicate effectively and keep an audience awake. Worse yet, it has become a substitute for us. (p97) PowerPoint is a lot like email: it’s a perfectly good tool that should make our lives easier, but it’s become a time-sucking, efficiency-mauling monster. (p98)
    If we are going to use PowerPoint, Hough recommends three simple suggestions:
    10/24 Only ten words per slide, and never smaller than 24pt font
    Don’t read your slides. Your audience is quite capable. Use them to illustrate.
    Prefer pictures to words. They will stick in people’s minds.
  12. If something goes wrong, act like nothing happened
    Everyone knows what happened, and ignoring it is weird. Acknowledge it, deal with it, and move on.
  13. Ignore your nerves, and they will go away
    Only zombies never get nervous. Nerves are good—breathe and embrace them.
    The truth is, nerves are a great bad thing! They are the body’s way of telling you that you care, that this is important. (p115) A helpful strategy for coming our nerves was developed by Dr Andrew Weir: breathe in through your nose for 4 seconds; hold that breath for 7 seconds; release the breath through your month with a whooshing noise for 8 seconds. This technique is used to help your body calm down.
  14. Control you emotions at all times
    Passion and emotion are okay.
    Emotional intelligence is a key concept in managing yourself as a presenter. (p121) Don’t fake it, and don’t be controlled by it, but expressing your true self appropriately to the context is important.

If you’ve been presenting or preaching for a while, and you have a feeling that you’re not really connecting as you should; if people complain you’re a bit hard to understand; if you don’t seem to be motivating change in people; if you think your talks could do with a tune up; then I recommend taking a look at this book.

Posted in Books, Preaching | Leave a comment

Please put Crizotnib on the PBS. Please!

This an edited version of a letter my wife, Fiona, sent to support an application to the Therapeutic Goods Association (TGA) to ask them to please put Crizotnib (Xalkori) on the Pharmaceutical Benefits Scheme (PBS). This drug has proven results and yet is virtually unaffordable to all, at $7400 per month.

I understand you are collecting letters of support for Crizotinib being accepted on PBS. I’m not sure if TGA read submissions from individuals, but here goes…

This is not a scientific submission, but more a letter from one family suffering through a family member having ALK+ lung cancer. Whilst the TGA doesn’t court letters of submission from patients, this is an attempt to explain how TGA decisions affect individual families.

My perfectly well husband presented with a pleural effusion in Dec 11, being diagnosed with ALK+ lung cancer. He missed getting on the Crizotinib trial, because by the time we got the result, he had already received his first cycle of carboplatinum, alimta, and avastin, thus making him ineligible for the trial.
I chose this combination over what was being offered by the PBS (and our oncologist) at the time—Carbo/Docetaxel—because international research seemed to suggest it was more effective and had less severe side effects for general lung cancers.

My understanding when I spoke to the TGA a couple of years ago, was that the testing for ALK had to be passed by MSAC, with Crizotinib going before PBAC at the same time, before the TGA could consider putting Crizotinib on the PBS. My understanding is that both MSAC and PBAC have again deferred decisions as of Nov 2013. At that point they were struggling to understand who to allow ALK testing for.

As a carer for her non-smoking 48 year old Aussie husband it was pretty obvious to me, especially when he came back EGFR negative, that we should ask for and pay for the ALK test.

Looking through the ‘ALK+ roll call’ discussions on http://www.inspire.com it’s still obvious to me who should get tested for ALK. They are all younger non-smokers, who present late with stage 4 metastatic symptoms, because the original is on the periphery, not in the bronchi like standard smoking cancers. There are also histological features which are more suggestive of ALK—signet ring or acinar histology.

Our pathologist noted these on David’s histology, alerting the thoracic surgeon that this was unusual for standard lung cancer, and that maybe there was something else going on.

Surely it’s not too hard to offer ALK testing as a priority to patients in this category.

I’ve also heard that there’s new testing becoming available, which will be much cheaper, quicker, and give more of an idea as to whom to send for the more expensive testing. Hopefully, this will be commonplace soon.

In 2014, about 11550 Australians are expected to be diagnosed with lung cancer. Approximately 15-20%, or roughly 2000 people, will be non-smokers with a genetic mutation. Of these approximately 3-4 %, or 345 people, will be ALK+ in this year alone.

The Inspire roll call only found about 10, but obviously not everyone reads or visits http://www.inspire.com, and nor is everyone connected via a clinical trial.

We do not know of any other ALK+ patients in Canberra, but then oncologists don’t share patient information. There hasn’t been anyone else with this mutation coming to the lung cancer support group at Canberra Hospital.

But then again, how many are being tested, or not tested because of financial reasons?

I’ve just referred a younger,  unusual, possible lung cancer patient to Canberra Hospital in this last week, and I’ll be willing to find money for him through my workplace or the Eden-Monaro Cancer Support Group, if need be, because he couldn’t necessarily afford the money for testing.

As stated earlier, my understanding was that PBS approval for Crizotnib was again deferred in Nov 2013. This seemed more due to semantics than actual proof that Crizotinib did or didn’t work, or the cost-benefits of approval.

Even for intelligent people in the medical profession, it is difficult to read and understand the documents deferring approval. To read that PFS has shown ‘statistical improvement’ is hugely exciting. But to read ‘that OS hasn’t been demonstrated’—how does one prove that, except by time and death?

As a carer it’s also hard to read the statistics of overall survival and progression free survival without taking it personally. These statistics are talking about the future of my husband. He can’t read them without being overwhelmed, even though he’s been outside the statistics thus far.

It shouldn’t be up  to the patients and carers to have to trawl through these statistics to prove to the government that life is worth living, that some good quality of life is better than life cut short for lack of funding for medication that works, even if just for a limited time.

My husband has responded miraculously to an Alimta/Avastin combo for over 40 cycles, being NED for nearly a year and a half now. These treatments have cost us very large sums of money. Avastin isn’t on the standard guidelines treatment plan and the study on the benefits of adding Avastin to Alimta has not yet been released. Given that this combination has worked for my husband, he continues to endure the physical impact and financial costs until there is definitive proof that it doesn’t help.

But, we still need Crizotinib to be placed on the PBS list. Please consider the following…

1. The demand of  3 weekly cycles is hard. It’s hard for my husband to psyche himself to go to the hospital every 3 weeks to pump poison into his veins, knowing that its going to make him sick for the next week, often spending 3 or 4 days in bed. Not that the following 2 weeks till the next cycle are easy, with fatigue, headache, GIT upset, mouth/tongue ulceration, pain, acne, skin rash, itch, and more.

From early on he’s had to add in Cymbalta for peripheral neuropathy, increasing amounts of antihypertensive, pain relief, antinauseants, dexamethasone, folic acid, Vitamin B12 injections, etc.

Do they consider the cost effectiveness of paying for medications to deal with the side effects of ‘standard chemo treatment’? There is also the cost of the private chemo ward every 3 weeks.
Because Alimta or Avastin weren’t on PBS when he started, all treatment had to be done through a private hospital.

How much simpler it would be—physically, mentally, emotionally, financially—if my husband had been able to simply take a Crizotnib tablet twice a day.

2. Unfortunately chemo brain is a real phenomenon too (as is carer’s brain). His memory isn’t as good as it was, and nor is mine. The 3 weekly cycles take a toll on all our family, including the kids.

3. Furthermore, no one can tell us how long one can continue on maintenance therapy. When my husband was diagnosed, it was still being debated as to whether patients shoud go on maintenance therapy, whether it added anything. Fortunately that debate has been won and put to rest.

There are some in the USA, in the Inspire network, who’ve been on maintenance for longer than my husband (I think about 5-6 years is the longest). But how long can one continue to use non-targetted therapy, continually killing ordinary, healthy cells every 3 weeks, without doing some permanent harm, perhaps even causing further cancer. There is no answer to that question yet.

4. He’s worked part time since mid 2012, returning to full time work this year. He’s continued to pay taxes since his diagnosis, using sick leave and long service leave until returning to work, paying his taxes at the same rate as prediagnosis.

I’ve had to work more, to pay for the chemo, so now I pay even more tax. We have never applied for Centrelink help, or been able to because of our income. I understand that even the Centrelink payments are being tightened up, it has to be proven that you’ll die within 2 years, when all you really want to do is prove them wrong and keep living. Having not asked the government for help with living, are we also to be denied the cost of medication by the same government as we continue both to live and pay for medication, and pay taxes?

Has the cost benefit analysis been done on how I and my 4 children would have coped with me as a widow and them fatherless?

I’ve been willing to pay the cost of initial chemo and maintenance chemo, as opposed to what the PBS would have given us for free, because I think the cost benefit analysis of having a husband who’s alive has been worth it. But not everyone is as fortunate financially or with such generous friends or workplaces, who’ve supported us through the financial impact.

5. We’ve always been told he could go to Crizotinib once the Alimta/Avastin failed. It’s always been his next step. But it’s extraordinarily expensive, at $7400 month, now it’s off the special access scheme. Suddenly our next step is unsure.

6. Access to trials isn’t a certainty, as we’ve already experienced.
Nor is it without cost, as ALK+ Australian patients have moved cities to be able to access the trials in the few major centres that are offering them. Had we gained access to the initial phase 3 Crizotinib trial, we would have had to travel to either Melbourne or Sydney.

7. Highly regarded world class experts in the field of ALK+ Adenocarcinoma, including an Australian, recommend first line Crizotinib. The latest “Up to Date”, does so: http://www.uptodate.com/contents/anaplastic-lymphoma-kinase-alk-fusion-oncogene-positive-non-small-cell-lung-cancer
How can doctors follow recommended international guidelines, if the Australian PBS is still years behind?

It’s quite distressing to me to have to be writing this submission in support of Crizotinib, when I wrote a very similar submission (a begging letter really) almost two years ago. Nothing has changed in Australia, in those years. Except more friends, colleagues, patients have died of lung cancer.

Lung cancer continues to be one of Australia’s biggest killer. Crizotinib has been approved as first or second line therapy in so many countries throughout the world. It is normal in other countries, but for some reason we continue to drag the chain on best-practice care.

In the USA the FDA has now approved the second generation targetted therapies for ALK+ patients ,both as initial and as second line treatments. We haven’t even got the first generation treatment approved as yet.

It is so frustrating that Australia is lagging so far behind. Bureaucracy seems to be holding us back unnecessarily. The irony is that Australians have been been benefitting from Crizotinib, at least since the phase 3 trial initiated in 2011.
Pfizer have been generously supplying both patients on the trials, and allowing patients to access the medication via the special access scheme until 30/6/14, when such access ceased.

Since that date, there have been at least two patients who’ve signed up to the Inspire Australian roll call for ALK+ patients who are struggling to how they can possibly afford $7, 400 per month. We should not be a country that only provides quality health care to the wealthy.

It’s enough being confronted with advanced lung cancer at a young age, let alone being faced with an unaffordable financial bill.

How many more people are either not being tested or not being treated because of financially prohibitive costs?

We can’t blame the drug company for trying to recoup some of their costs, when the Australian government has benefitted from their provision of the drug via trials and a special access scheme for two and a half years.

With the new trials investigating LDK378 initiation in both Crizotinib resistant and naïve patients in Australia, isn’t it time that Crizotinib is given government recognition for it’s important place in the treatment pathways?

Chemotherapy isn’t a one size fits all. As proven, Alimta/Avastin chemo has been a God-given, proven-thus-far combination for my husband. But it hasn’t worked for others.

Crizotinib has worked amazingly for some, but some have had resistance develop fairly quickly. The second generation targeted drugs will no doubt have similar success and failure stories. But that doesn’t mean people should be denied access to them if they can’t afford to obtain them privately.

What is obvious was that the older, cheaper drugs like Docetaxel were failures in PFS, OS, quality of life and every parameter you can think to measure them by, but they’re still held up as the ‘gold standard’ of treatment, by which to compare newer medications which aren’t designed to act it the same way, so shouldn’t be compared. This is ludicrous.

I hope this helps the application for Crizotnib to be place on the PBS.

Yours sincerely

Dr Fiona McDonald  (MB BS)

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