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Cancer is accorded a special status in public debates, policy, clinical research and clinical practice. Relative to disease burden, cancer research receives a disproportionately high amount of funding compared to other diseases. In addition, some healthcare systems preferentially fund treatments for cancer. The Cancer Drugs Fund under the NHS, for example, created a funding mechanism dedicated solely to cancer drugs, which are treated more favourably when there are gaps in the evidence base supporting their cost-effectiveness. Meanwhile, the desire to detect cancer earlier via screening remains highly controversial—both in terms of its overall effectiveness and in terms of the best way to treat low-risk cancers. Such issues consistently place cancer under public scrutiny, creating dominant discourses that shape the very experience of the disease within one’s culture.
This conference brings together perspectives from clinical research, medical practice, philosophy, health economics and psychology to explore what makes cancer so special. Is the current amount of funding for cancer research and treatment justifiable? Are existing arrangements consistent with public perceptions of cancer, and what can the lived experience of actual patients, carers and clinicians teach us? Where is cancer research, treatment and policy going? This conference provides an opportunity to examine whether the special status of cancer is justifiable, and to explore the implications for the future of medicine.
Speakers: Karl Claxton (University of York), Peter Gøtzsche (Nordic Cochrane Centre), Shelley Hwang (Duke University), Stephen John (University of Cambridge), Christopher McCabe (Institute for Health Economics), Christian Munthe (University of Gothenburg), Mark Sheehan (University of Oxford), and Carla Willig (City, University of London).
For administrative enquiries please contact Michelle Maciejewska.
This event is sponsored by the Limits of the Numerical research group at CRASSH, University of Cambridge, with generous support from the Independent Social Research Foundation (ISRF).
Unfortunately, we are unable to arrange or book accommodation for registrants. The following websites may be of help:
|Thursday 5 April 13.30-13.45||
Karl Claxton (University of York)
Christian Munthe (University of Gothenburg)
Peter Gøtzsche (Nordic Cochrane Centre)
|Friday 6 April 9.30-11.30||
Shelley Hwang (Duke University)
Carla Willig (City, University of London)
Stephen John (University of Cambridge)
Chris McCabe (Institute for Health Economics)
Mark Sheehan (University of Oxford)
Roundtable and closing remarks
Karl Claxton: 'How much can the NHS afford to pay for new cancer drugs?'
Difficult but unavoidable decisions about access to new drugs can be made in an accountable and ethical way by asking whether the improvement in health outcomes they offer exceeds the improvement in health that would have been possible if the resources required had, instead, been made available for other health care activities that would benefit other NHS patients. Recent research has, for the first time, estimated the effects of changes in NHS expenditure on the health of all NHS patients. This research shows that the NHS is currently paying too much for new drugs. It means that more harm is being done to other patients when new drugs are approved for NHS use. The increasing pressure to approve new drugs more quickly at prices that are too high will only increase the harm done to NHS patients overall. The political pressure to support a multinational pharmaceutical sector cannot justify the real harm that has and will continue to be done to NHS patients. What is required is a rebate mechanism to address the current discrepancy between the prices charged and how much the NHS can afford to pay for the benefits that new medicines offer.
Peter Gøtzsche: 'Why you should usually avoid cancer screening and always distrust cancer charities' seducing announcements about screening'
We have carried out extensive research on mammography screening and published the first Cochrane review about this in 2001. I shall explain why women should avoid going to mammography screening, why men should avoid the PSA test and why we should all avoid some other common cancer screening tests, with sigmoideoscopy and Pap smears being the exceptions that confirm the general rule of ignoring the many offers.
Shelley Hwang: ‘When should we intervene for cancer?’
Advances in epidemiology and cancer biology have clearly established that the group of diseases currently deemed "cancers" in fact encompasses many conditions with enormous variation in biologic behavior. Decades of cancer screening have preferentially diagnosed early, asymptomatic, indolent lesions. This trend will only increase as screening technologies become ever more sensitive, leading to an epidemic of overtreatment in completely asymptomatic individuals. The treatment of many of these conditions often has unclear benefit on cancer mortality, while coming at the clear cost of treatment-related morbidity. Molecular testing may have a role in refining treatment recommendations based upon risk of progression. Further, risk modeling may yield insights about which patients derive greatest benefit from intervention. For asymptomatic tumors at low risk of cancer progression, there may be little to no benefit to treatment, whereas for more high-risk lesions, progression to invasion and metastasis may be more likely. Given the lead-time between the development of precancer and progression to invasive disease, there may also be a case for tailoring intervention of screen detected cancer by age and the presence of competing comorbidities. The decision of whether and when to intervene for screen-detected cancers will require a multidisciplinary effort including expertise in cancer biology, mathematical modeling, psychology, health policy, decision science and communication, as well as strong engagement from patients and health care providers. In this context, the case of breast precancer (ductal carcinoma in situ, DCIS) will be presented as a case study.
Stephen John: '"First, do no harm?" Dread, overdiagnosis and the ethics of cancer screening'
Early detection of cancer saves lives. So, too, does mass screening. Unfortunately, these interventions also cost lives. As such, the introduction of new testing modalities or screening programmes faces a serious challenge: that doing so breaches the principle of non-maleficence. The first part of this talk sets out this problem, and shows how it differs from the more familiar concern that programmes do more harm than good. The second part turns to consider an obvious response: that, as long as individuals give fully informed consent to testing or participation in screening, then any resultant harm is justified. The second part of this paper sets out some problems for appealing to this "volenti non fit injuria" principle in general, and, in particular, in cases involving testing for cancer.
Chris McCabe: 'Cancer: check your privilege!'
The UK Cancer Drugs Fund is just one example of a policy response that provides people with cancer a privileged call on limited health care resources. Most developed health care systems have created instituted policies that directly or indirectly maintain the privilege status of people with cancer. In this paper I briefly review examples of ‘cancer privilege policies’ from the around the world. I then summarize the key arguments that have been advanced in the clinical and health policy literature to justify cancer’s privileged status. I then relate these to justifications to the emerging evidence on social values in health care resource allocation, and comment on the challenge that these data present to cancer privilege. In the final section of the paper I examine cancer privilege through the lens of horizontal and vertical equity, and ask whether it is time, in interests of fairness, to check cancer’s privilege.
Christian Munthe: 'The magic word? Ethical experience of prioritizing cancer-related health action in a Swedish context'
Across health systems and the history of modern welfare societies, the experience of cancer as a privileged diagnostic category in the prioritizing of resources for different health actions is commonplace, although there are notable exceptions to be found in low resource settings. While this situation can often be criticised from an ethical standpoint, health resource allocation also has a political pragmatic side that may, if not justify, so at least partly excuse the way in which measures related to cancer are being given privileged access to healthcare and public health resources. This since democratically elected political representatives cannot completely ignore the iconic status of cancer in the public mind. I describe some of this dynamic based on the Swedish experience of introducing screening and testing programs, as well as new drugs for cancer treatment. While Sweden is certainly not immune to the privileged standing of cancer in health resource allocation, there is a development in public and popular attitude towards a more egalitarian conception of cancer disease compared to other diseases. Parts that explain this development have to do with a new and more systematic focus on assessing the effectiveness of and evidence for suggested health actions according to generic models, such as HTA, standardised rules how priority setting arguments must be shaped in order to have political validity, and a broader awareness of the phenomenon of opportunity cost in policy making generally. In addition, political agendas increasingly focused on cost cutting in public expenditure in spite of ever greater levels of societal wealth has certainly also contributed, albeit that mechanism may probably also be properly criticised from an ethical standpoint.
Mark Sheehan: ‘Fair allocation of resources, rarity and the specialness of cancer’
In the first part of this paper I will briefly sketch an argument for why treatments for rare diseases ought to be treated differently in decisions about resource allocation. This sketch is useful because it becomes a contrast case when we turn to the question of whether treatments for cancer are special and should be treated as such when prioritising. The broad conclusion of this part of the paper is that when it comes to resource allocation, cancer is not special.
In the second part of the paper, I attempt to turn this conclusion on its head by examining a range of apparently ordinary reasons for thinking that cancer is special and should be treated as such. The rationale for attempting this reversal is the clear specialness that is attributed to cancer in our society and its institutions.
Carla Willig: 'Phenomenological repercussions of cancer discourse'
In this paper I reflect on the process by which my attention was drawn to the phenomenological repercussions of being positioned within dominant cancer discourses. Following my own cancer diagnosis in 2007 I experienced first-hand the impact of discourse on experience. I became painfully aware that one of the many challenges of being diagnosed with cancer is that it requires us to make sense of our changed circumstances and to find meaning in an unwanted experience whilst being confronted with the meanings that other people attribute to this experience. From a social constructionist perspective, such meanings are constructed from the discursive resources available within one’s culture, and, as a discourse analyst and qualitative researcher, I began to be interested in mapping the language of cancer and to examine its social and psychological effects. This paper provides an overview of discursive positions available to those diagnosed with cancer and traces some of their implications for lived experience.