I didn’t even know this word existed but it comes as no surprise really since the dreaded C-word has struck fear in many people and will do so for some time to come I’m afraid. But first I want to acknowledge Emily Davidson’s comment to my previous blog that inspired me to write this one.
The Bad and the Ugly
It is true that cancer is a horrible disease that seemingly strikes indiscriminately and unpredictably. The cachexia or wasting away, the unbearable pain, the loss of certain bodily functions as a result of the cancer growth and/or spread (metastasis) and the quite often severe side effects of the treatment(s) are nightmarish memories that many people have that have lost loved ones to the disease. Cancer is often thought of as an alien parasite that invades the body. However, the fact that cancer originates from one’s own cells is exactly one of the reasons why it is so hard to treat and why the body’s immune system has considerable difficulty in recognising cancer cells. (NB cancer cells do get recognised but they develop cunning ways to avoid attack by the immune system and even turn the immune system to their advantage) The sometimes horrendous suffering of terminal cancer patients has led some to be of the conviction that it is inhumane to prolong this situation and indeed to call for euthanasia. My mother country the Netherlands has legalised euthanasia in contrast to the country where I currently live, New Zealand, where it is illegal. This attitude to cancer and to give people and treating physicians a choice on how to deal with it is, in my opinion, an important step towards “de-politicising” cancer and to start a public debate of all the issues surrounding cancer. The debate will be ongoing and will have to reflect changing attitudes, convictions, and it will be influenced by other factors, e.g. scientific “discoveries”, socio-economic changes (the aging population in Western countries. NB cancer is an age-related disease), and other yet unknown ones. In hindsight it was perhaps unfortunate that the National Cancer Act of 1971 was labelled the “War on Cancer” and it became the highly politicised catch-phrase it still is. Obviously, it was important to set an aspirational goal, but unfortunately it also created the illusion that the “war can be won”. Due to the sky-rocketing costs of new anti-cancer therapies people frequently felt that they had no other choice but to mortgage or re-mortgage their homes to “win the battle”. This was and is almost invariably fuelled by the irrational fear of death amongst us Westerners. This “conditioning” turns any discussion about cost-benefit analysis into a highly emotive, polarised slugfest that, in the long tem, serves nobody. An illustrative example is what happened two years ago in New Zealand with the funding of Herceptin.
The Herceptin Story in New Zealand
In New Zealand we have an agency called PHARMAC. To explain a little about PHARMAC: PHARMAC, the Pharmaceutical Management Agency of New Zealand is part of the overall New Zealand medicines system working to improve New Zealanders' access to, and optimal use of, medicines. PHARMAC interacts with other parts of the system, such as the Ministry of Health (MoH), Medsafe and District Health Boards (DHBs), to provide New Zealanders with affordable access to prescription medicines, and to promote the optimal use of medicines. Medicines New Zealand provides the platform for a medicines system that:
· delivers equitable access to safe, quality medicines that are used in the most effective ways possible
· is transparent, accessible and trusted by stakeholders
· delivers affordable medicines that meet the needs of New Zealanders and is sustainable for New Zealand.
One could say that PHARMAC is the Kiwi (New Zealand) equivalent of NICE. The timeline of the Herceptin funding in New Zealand make for interesting reading. In June/July 2006 it was decided not to fund Herceptin for two main reasons: 1) at the time there were no data that showed a long-term benefit of Herceptin, particularly on life expectancy; 2) The high cost (funding Herceptin for early breast cancer would cost NZ$20-$25 million per year for up to 320 patients, compared to a current [at the time] spend on all other hospital cancer drugs of about NZ$35-40 million). After ongoing review etc., PHARMAC approved for concurrent 9 weeks’ treatment with Herceptin for HER 2 positive early breast cancer in April 2007. On 29 June 2007 eight women went to the High Court, essentially to force PHARMAC to change its mind and fund 12 months' Herceptin. After extensive legal and consultation razzmatazz PHARMAC still declined funding for 12 months Herceptin for HER 2 positive early breast cancer in July 2008. After a change of government following National Elections it was announced on 10 December 2008 that a 12 month course of Herceptin would become available as part of the election commitment (“election promise”). The cost of this decision was and has never been released, probably because nobody knows, "reasons of commercial sensitivity", and the risk of political backlash.
Incremental improvements in prolonging life or quality of life are being achieved, at an enormous financial cost, but the one thing that is sometimes overlooked and at the same time often gives hope is that some patients do benefit much more from treatment than others. One of the dilemmas that treating physicians face is to avoid creating unrealistic or even false hope that one particular patient is going to be one of those “good responders”. The fact is we have only just started to develop tools that may one day put us in a much better position to predict a priori which patients are going to benefit from which treatments. These tools, which are generally described under the umbrella term of “personalised/individualised medicine”, find their origin in genomics and the sequencing of the human genome. Since cancer is a genetic disease this new tool has been embraced with considerable enthusiasm and optimism by scientists and clinicians alike and has led to possibly hyped expectations (e.g. Science communication in transition: genomics hype, public engagement, education and commercialization pressures). Genomics has led to an explosion of other “omics”: proteomics, metabolomics, nutrigenomics, etc., and the new buzz word is (bio)marker. (NB Diagnostics is one area that’s on the increase) Undoubtedly, some interesting and useful things will come out of all this although nobody really knows how to go about the inevitable paradigm shift and where this may take us in terms of development of new drugs or treatments, patient selection and monitoring, and, ultimately, how we deal with cancer. Even less clear is the cost-benefit analysis, i.e. whether biomarkers, for example, actually will bring down the costs of conducting clinical trials and, consequently (?) the market price of new treatments. Some people raise a cautionary note to the above approach by postulating that genetic and epigenetic changes observed in the bulk of tumour cells are not necessarily providing the essential information needed for treatment decisions but that the critical cells are the so-called stem cells, which are the truly tumourigenic cells within a tumour.
Although everybody has heard of “the war on cancer” there are only 257 citations in PubMed with both “war” AND “cancer” in the title!? However, it is obvious that, as with any war, we are dealing with moral, ethical, emotional, political, and financial/economical issues that no one discipline or group can solve. It seems that the many stakeholders are “warring” amongst and against each other and there’s no way out or end in sight. A strictly rational/logical/factual approach may provide a solution although I think a national and perhaps even global public debate will need to be started to really make some changes before they are forced upon us and choices are taken away (arguably some people already have very limited choices depending or their socio-economic status (e.g. insurance, personal wealth), the country they live in (e.g. “rich”versus“poor”), etc.) . My suggestion would be to start with the formation of a group similar in make-up to ethics committees. I also think that such group would benefit immensely from the participation of people with, but not limited to, a background in philosophy, who are trained and skilled in “good thinking” (and “good speaking” and “good doing”). Such people could act as facilitators and moderators rather than chairing the meetings (real or virtual), which may be needed when dealing with broad representation from the public/society. If the group can lift the debate above political point-scoring and achieve bi- , tri-, or poly-partisan agreement (consensus) then there might just be a chance to soften the suffering for future cancer patients and the people close to them. For example, it could be set up akin a Royal Commission (a Commonwealth institution; I don’t know the US equivalent, if there is any), which would avoid undue influence by the government, with a broad, almost open-ended “Terms of Reference”. As I mentioned before, I think any debate of this nature will have to be ongoing and reflecting the ever changing society. With the pervasive (!) presence of the internet public submissions could be made easily and opinions shared freely. One would think that it would require little money, some good-will and common sense to get this started.