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Cancer patient advocates respond on genetic testing news

Sally Crossing, Chair, Cancer Voices NSW writes:

“The Sydney Morning Herald’s recent front page article “Genetic testing decides who gets breakthrough drug” brings into public discussion an urgent need for an efficient, timely approvals process for these kinds of tests.

New cancer drugs, to which our own genetic profiles respond, can’t be given without these tests.  And those tests need approval before moving onto the MBS.  A Catch 22?

People with cancer see drugs which are personalised to work with the profile of their own cancer as the light on the hill.  

None of us wants to take toxic chemotherapy without some kind of certainty that it will actually work for US.  Recent advances are making personalised cancer treatment more of a reality – the drug Erbitux for bowel cancer being one of the latest.

Cancer Voices NSW has called on the Commonwealth Government to upgrade and update its processes for approving genetic profile tests.  Over recent years, we have supported the Royal College of Pathologists’ call for a National Framework for Genetic Testing, and participated in the Health Technology Assessment Review.  We are not pretending this is an easy issue to resolve, but we would like the powers that be to reassure us that they are onto it, and that a timely timeframe has been established.

Cancer Voices NSW recently convinced the Cancer Council NSW to fund a collaboration of seven major research institutions working in the area of pharmacogenomics, to speed up discovery through partnership.  The International Cancer Genome Consortium is investing to pretty much same thing on a grand scale.

Clinical translation of this work will depend on access to tests. This is a hugely important field for researchers, clinicians, patients and the community – with big savings for the pubic purse by gradually eliminating the ‘one size fits all’ nature of current cancer treatment.”

Comments 5

  1. Simon Quilty says:

    Dear Sally,

    Could you please disclose whether Cancer Voices NSW has any industry funding or conflict of interest?

    Thank you.

  2. Sally Crossing says:

    I suggest that Simon Quilty checks our website http://www.cancervoices.org.au for full info about Cancer Voices NSW. Am wondering about the reason behind his question?

    Dont worry further, Simon. Cancer Voices NSW is not funded by any industry – see our Position Statement on website regarding this. We are “funded” by the time, thought and commitment of cancer consumer advocates wanting to make a difference for people affected by our common disease. Hardly conflicted!

  3. Simon Quilty says:

    Sally,

    I did not intend to be rude, but I think my question is very valid.

    Erbitux or cetuximab for metastatic colorectal cancer costs $21,000 per treatment. The advantage? A randomised control trial called CRYSTAL, funded by Bristol Myers Squibb showed that people with metastatic disease who got cetuximab on top of normal therapy lived 23 months vs 20 months for those who did not.

    There are many doctors who question the economics and ethics of these new super-drugs.

    Firstly, the drugs are here because of the thousands of unfortunate people suffering from bowel cancer who volunteered as guinea pigs with no promise of a benefit, and yet the pharmaceutical company who manufactures the drug for an estimated 5-10% of the cost of it’s retail price rolls in the profit.

    Secondly, an extra three months of life with a very nasty disease, suffering from the side-effects of cetuximab – terrible rash, abdominal pains, weakness, constipation, insomnia and the list goes on. I have heard oncologists sell these side effects as trivial and watched people consequently suffer quite terribly. There is no right and wrong here, but palliative care is just as valid option and often more dignified.

    I have seen plenty of people treated with cetuximab and I am far from convinced of the benefits.

    It therefore stands that when you advocate for the government to spend many millons more on genetic tests for such medications, doctors such as myself will wonder exactly where it is you are coming from.

    I admire your good work, but please Sally don’t shut down arguments on the premise that it is your advocates who look after people with cancer. I look after them too.

  4. Croakey says:

    Hi Sally and Simon
    I don’t think this question should be viewed as rude. It should be viewed as essential when any group or prominent person is making public comments about tests and treatments (or other interventions). Too often we see people in the news promoting one treatment or another without declaring their ties to the companies involved. Whether they are medical specialists, consumer groups or NGOs, the question needs to be asked much more often than it is. That Cancer Voices values its independence from government and industry is to be commended.

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