Access to new cancer medicines in Australia: dispelling the myths and informing a public debate

Despite the high level of spending on cancer medicines in Australia, consumer organisations and the pharmaceutical industry often make claims of delayed or lack of access to new cancer medicines—claims that are frequently supported by prominent coverage in the Australian media. These claims, while morally and psychologically compelling, tend to ignore the complexity of medicines funding decisions. In this commentary we summarise the current situation regarding the registration and funding of cancer medicines in Australia, elucidate the main challenges associated with access to cancer medicines in the Australian context, and describe some of the steps that have been taken to address these challenges. Keywords: Cancer medicines, Funding, High prices, Consumer engagement, Transparency, Public debateNHMRC project grant, App 108067

An empirical reappraisal of public trust in biobanking research: rethinking restrictive consent requirements

Collections of human tissue removed from patients in the course of medical diagnosis or therapy are believed to be an increasingly important resource for medical research (biobank research). As a result of a number of tissue-related "scandals" and increasing concern about ownership and privacy, the requirements to obtain consent from tissue donors are becoming increasingly stringent. The authors' data show that members of the general public perceive academic biobank researchers and their institutions to be highly trustworthy and do not see the need for recurrent, project-specific consent. They argue, on the basis of their empirical findings, that we should question the trend, at least in some settings, toward ever more stringent consent requirements for the use of tissue in research. They argue that this approach, while perhaps counterintuitive in the current regulatory environment, can be both ethically and legally sound so long as channels of communication are maintained and third-party relationships are tightly controlled

The Medical Innovation Bill: Still more harm than good

The Medical Innovation Bill continues its journey through Parliament. On 23 January 2015, it was debated for the final time in the House of Lords and with one final amendment, the House moved to support the Bill, which then moved to the House of Commons on 26 January. It will be debated again on 27 February 2015. The Bill’s purpose is to encourage responsible innovation in medical treatment. Although this goal is laudable, it is argued that the Bill is unnecessary and has the potential to undermine the very cause it aims to advance. More useful for encouraging responsible innovation is the continued education of health-care professionals on how the law already supports practitioners who look to improve care through responsible innovation

Is Gly16Arg β₂ Receptor Polymorphism Related to Impulse Oscillometry in a Real-Life Asthma Clinic Setting?

PURPOSE: We evaluated whether Gly16Arg beta2-receptor genotype relates to impulse oscillometry (IOS) in a real-life clinic setting. METHODS: Patients with persistent asthma taking inhaled corticosteroid ± long-acting beta-agonist (ICS ± LABA) were evaluated. We compared genotype groups comprising either no Arg copies (i.e. GlyGly) versus one or two Arg copies (i.e. ArgArg or ArgGly). IOS outcomes included total airway resistance at 5 Hz (R5), central airway resistance at 20 Hz (R20), peripheral airway resistance (R5–R20), reactance at 5 Hz, area under reactance curve (AX) and resonant frequency (RF). In addition, we recorded ACQ-5 and salbutamol use. RESULTS: One hundred and twelve ICS-treated asthmatic patients (mean ICS dose 1238 µg/day), mean age 43 years, ACQ 2.34, FEV1 82 %, R5 177 % were identified—89 were also taking LABA. 61 patients were GlyGly, while 14 were ArgArg and 37 were ArgGly. There were no significant differences in IOS outcomes, ACQ or salbutamol use between the genotypes. The allelic risk (as odds ratio) for less well-controlled asthma (as ACQ > 1.5) was 1.1 (95 % CI 0.72–1.68) in relation to each Arg copy with a corresponding odds ratio for abnormal R5–R20 > 0.07kPA/l.s being 0.91 (95 % CI 0.57–1.44). 71 % of patients had an ACQ > 1.5 in the GlyGly group, versus 67 % in GlyArg/ArgArg group, with corresponding figures for abnormal R5–R20 > 0.07 kPa/l.s being 69 versus 73 %. CONCLUSION: In a real-life clinic setting for patients with poorly controlled persistent asthma taking ICS ± LABA, we found no evidence of any relationship of Gly16Arg to IOS, ACQ or salbutamol use

Cancer As Rubbish: Donation of tumor tissue for research.

Tissue banking (or biobanking), thought by many to be an essential form of medical research, has raised a number of ethical issues that highlight a need to understand the beliefs and values of tissue donors, including the motivations underlying consent or refusal to donate. Data from our qualitative study of the legal, social and ethical issues surrounding tumor banking in New South Wales, Australia, shows that participants’ attitudes to donation of tumor tissue for research are partially captured by theories of weak altruism and social exchange. However, we argue that the psychological rewards of value transformation described by Thompson’s rubbish theory provide additional insights into participants’ attitudes to tumor donation. We believe our data provides sufficient justification for an approach to regulation of tumor banking that is aimed at fostering a relationship based on the notions of virtuous reassignment and social exchange. Keywords Ethics; genetics; research participation; risk perceptionsUniversity of Sydney Cancer Research Fun

Views of health journalists, industry employees and news consumers about disclosure and regulation of industry-journalist relationships: An empirical ethical study

Bioethicists and policymakers are increasingly concerned about the effects on health journalism of relationships between journalists and private corporations. The concern is that relationships between journalists and manufacturers of medicines, medical devices, complementary medicines, and food can and do distort health reporting. This is a problem because health news is known to have a major impact on the public’s health-related expectations and behaviour. Commentators have proposed two related approaches to protecting the public from potential harms arising from industry-journalist interactions: greater transparency and external regulation. To date, few empirical studies have examined stakeholders’ views of industry-journalist relationships and how these should be managed. We conducted interviews with 13 journalists and 12 industry employees, and two focus groups with consumers. Our findings, which are synthesised here, provide empirical support for the need for greater transparency and regulation of industry-journalist relationships. Our findings also highlight several likely barriers to instituting such measures, which will need to be overcome if transparency and regulation are to be accepted by stakeholder and have their intended effect on both the quality of journalism and the actions of news consumers.NHMR

Rules of Engagement: Journalists’ attitudes to industry influence in health news reporting.

Health-related industries use a variety of methods to influence health news, including the formation and maintenance of direct relationships with journalists. These interactions have the potential to subvert news reporting such that it comes to serve the interests of industry in promoting their products, rather than the public interest in critical and accurate news and information. Here we report the findings of qualitative interviews conducted in Sydney, Australia, in which we examined journalists’ experiences of, and attitudes towards, their relationships with health-related industries. Participants’ belief in their ability to manage industry influence and their perceptions of what it means to be unduly influenced by industry raise important concerns relating to the psychology of influence and the realities of power relationships between industry and journalists. The analysis also indicates ways in which concerned academics and working journalists might establish more fruitful dialogue regarding the role of industry in health-related news and the extent to which increased regulation of journalist-industry relationships might be needed.NHMR