October being breast cancer awareness month, I was recently invited by a major pharmaceutical company to talk about my long experience of early, then later, metastatic breast cancer, and how this lead me to my work in cancer consumer advocacy.
I took the opportunity, which my hosts welcomed, to put to them some of the main issues we cancer consumers think need to be addressed, and hopefully with industry’s support.
I should say up front that Cancer Voices, the independent volunteer organisation for people affected by cancer in Australia, is entirely independent of government or industry funding. This means that we can have these kinds of discussions with both government and industry, without any fear or favour.
From little things – namely ideas after a cancer diagnosis – big things grow!
I have managed to survive metastatic breast cancer – and cancer consumer advocacy – for quite a long time, 20 years since first diagnosed. I was just 49 when I self-detected a lump in my left breast while on a small ship heading to Antarctica in 1995. This was followed by a lumpectomy and radiotherapy, the accepted treatment for early breast cancer in 1995. No chemo or Tamoxifen was recommended in those days for the premenopausal.
After publishing some reflections on my early experiences, I was invited by the then National Breast Cancer Centre to do a short training course in consumer advocacy and research. That switched on the proverbial light, and I could see how, using my existing skills honed during a paid career in banking and government, I could do some meaningful work giving back and make a real difference for other people. I have to admit that giving back was not something which had interested me until then, embroiled as I was in work, children at school, a house in Sydney and a country farm, not to mention a husband and a dog.
However, that “light switch” moment led me to leave that paid career to start the Breast Cancer Action Group NSW in 1997. BCAG’s aim was to provide an informed voice for women affected by breast cancer and to advocate for improvement in areas identified by its members – 700 at its peak!
Following a string of successes (including MBS funding for Herceptin for metastatic breast cancer), I realised that there were many issues shared by most cancer types and that there was a real need to address them. We broadened our reach, and increased the volume of the “voices” by setting up Cancer Voices NSW in 2000. Cancer Voices Australia, with which I remain very involved for national level issues, followed. I most recently set up the Australian Cancer Consumer Network which links 30 cancer consumer groups – some generic like Cancer Voices and other for specific cancers. This was launched in federal Parliament last November by the Parliamentarians Supporting Cancer Causes. From little things – namely ideas after a cancer diagnosis – big things grow!
My own cancer kept returning every few years, eventually with a diagnosis of metastases in 2004, to remind me what that “journey” is really like – biopsies, lumpectomies, radiotherapy, lymphoedema, one mastectomy, a liver resection, many CT scans, MRIs, PET scans, endocrine therapies, an MTOR inhibitor, and now, two oral chemotherapies. I have managed to avoid IV chemo, and am not favourably interested unless I can be sure that the toxic cocktail will actually have a positive impact on my particular cancer. Finding this out may mean another liver biopsy for some nice fresh tissue, as my liver is HQ for tumours again, so it can be analysed for pharmacogenomic markers. The concept behind this last process could become a hallmark of future cancer treatment – matching specific tumour profile to tailored drugs which will actually work.
So far, although metastatic for eleven years, we (my medical team and I) are keeping my cancer fairly well at bay. Luckily there are now drugs which were only a twinkle in the eyes of researchers when I was first diagnosed, and some older ones now used across cancers. The two I now take are subsidised via the Pharmaceutical Benefits Scheme – so thanks go to the compassionate taxpayer. Yet there is no certainty that these will work, or for how long, a fact that all cancer patients ultimately have to live with. Mine is an example of the changing nature of the cancer experience, a change which will mean many more of us will be round a lot longer, all very keen to use the next life-, or quality of life-extender and to survive as well and as long as we can.
If I hadn’t developed, lived with, and so far survived, cancer I certainly would not have had this extraordinarily rewarding career of cancer consumer advocacy. My message here is that the collective of willing, informed, inspired and networked individuals is the strength of the “voice”. Individuals alone may help, but do not have the credibility or the power of the many. This is a basic democratic concept, nothing new at all. And we know it works.
What can pharma do about it? Here are some thoughts…..
Obviously the big problem is that we still know so little about cancer – which now kills more Australians than any other disease. We know so little about the effectiveness of drugs prescribed in the population, as opposed to the clinical trials bubble. There’s no post marketing surveillance YET… Nor specific knowledge about the severity or likelihood of side effects – it’s still mostly “suck it and see”, and hope to be able to cope. Many like me move from one cancer drug to another, as each fails us. And please note – the drug fail US, not the other way around.
Directions for metastatic cancer R & D
Consumers are looking forward to the day, and this is possible to a certain extent already, when their tumour can be profiled to enable a tailored treatment approach – replacing the present one-size-fits-all approach with its uncertain outcomes and a lot of suffering.
For pharma, tailored drugs could mean smaller markets. This raises challenges as to how to fund their development, how clinical trials may need to change and how the PBS will be able to pay. The recent Senate Inquiry into Access to new and innovative cancer drugs, in which Cancer Voices participated, notes these challenges and has some valuable recommendations.
On the cost side of things, it will become increasing difficult to justify charging huge prices for drugs which cost very little to make. Yes, we know about the R & D costs, and the marketing costs – but it will become harder to convince governments to pay over the top prices for drugs which don’t have great track records for efficacy. Of course, if they are tailored to tumour profiles, their value will be more compelling for funders. It’s in all our interests – patients, clinicians and industry – to get this right for long term sustainability.
Security of supply is an issue which needs a solution right away.
Not long ago, a pharmaceutical company withdrew its supply of the oral chemotherapy cyclophosphamide. The uncertainty for cancer patients and their medical oncologists led Cancer Voices to call for a review of the process (if any exists) for ensuring that a cancer drug in current use is not withdrawn from the market without watertight arrangements being made for another supplier to provide continued access. Luckily, another eventually did pick up this older common cancer drug and saved the day for many of us patients… While the TGA must be notified, it can’t force anyone to make or import an in-use drug. We would like to see industry put up some ideas about how to ensure security of supply of drugs like the one in this example.
Information for consumers of your products – another issue
Health consumers and their organisations have been concerned for some years about the lack of information coming with packaged drugs. While the Pharmacy Guild of Australia negotiated for payments to pharmacies to print off Consumer Medicine Information (CMI) sheets, a number of studies show that this rarely happens, and only when requested. We see this as quite dangerous.
Cancer Voices has asked industry to restore printed information, as well as direct people to their websites, on the packaging of all products. Some companies have done so and that is much appreciated by consumers of their product.
Another problem for us is that the CMI information is “blanded down” – it’s usually hard to know how likely or common a side effect is. It would be helpful to have some percentages or a range of risk values incorporated, or a direction to the supplier’s website for more crunchy information at the very least. Risk level should of course be in absolute, not relative, terms.
Data – Another area of concern.
Post marketing surveillance and its data collection needs to happen.
Understanding how a drug preforms in the population which uses it is much more valuable than more limited information from clinical trials. I remember in the Herceptin campaign in which I was involved through the Breast Cancer Action Group, we found that clinical trials showed that women with MBC could only expect a few extra months of life from the drug. But women who had taken it before our successful advocacy to have it publicly funded (via MBS not PBS then), told us a different and much more positive story.
We are cheered that there are moves afoot to amalgamate data from both PBS and MBS (and maybe even the TGA) so we can see prescribing patterns and actual usage, and that the new e-health electronic record, MyHealth record, will show this for each individual. This will help planning enormously at both population and individual levels. We imagine it will help industry as well.
Data about incidence of recurrence and metastases is essential, and is currently missing. How can we plan the services we need without it? We would like to see industry support for this too.
Please keep this available to patients who need your drugs before they get onto the PBS – they may not have the time to wait. Again, it is a difficult call sometimes, but until we review the whole process, it can be the only way, short of being accepted for a clinical trial, that some people with cancer can access a potentially life-saving – or quality of life enhancing – new drug, or older ones for new uses.
We cancer patients depend on industry to develop, prove and supply good drugs for cancers. This is obvious and well acknowledged. We are the demand and you the supply – you can tell I am an old economist. So we should keep our communications lines open and active to advance some of these crucial issues.
Sally Crossing AM is Chair Cancer Voices NSW and Convenor, Cancer Voices Australia. Sally has been involved in the Australian cancer consumer movement since 1997, and has had breast cancer since 1995. This year she received an Honorary Doctorate from the University of Sydney for “extraordinary leadership and contributions to supporting those with cancer from diagnosis, though treatment, care support and survivorship, in both advocacy and research”.
You can learn more about Cancer Voices here.