Finding the ‘mean’ in debates about access to high cost cancer medicines

Narcyz Ghinea1, Jessica Pace1, Claudia Harper1, Wendy Lipworth1

1 Centre for Values, Ethics and the Law in Medicine, the University of Sydney, Medical Foundation Building K25, NSW 2006.

The cost of medicines is currently an issue of major concern to Australian patients, physicians and government. Exorbitant prices for some medicines mean that most patients rely on Pharmaceutical Benefits Scheme (PBS) to ensure access to medicines. When medicines are not listed on the PBS, physicians often have to lobby hospitals or pharmaceutical companies to provide their patients with free or subsidised access. Many consider this to be an ethically untenable situation, and they appeal to ‘goods’ such as ‘innovation’, ‘compassion’ and ‘affirmative action’ as arguments for increased access to medicines. All of this places immense pressure on the government to fund more medicines more quickly, even if these medicines provide only marginal benefits, are supported by relatively little evidence, and/or threaten the sustainability of the PBS.

In this workshop, we aim to develop a more nuanced bioethical perspective of the debate about access to high cost medicines. We will begin with a series of short presentations that describe empirical research we have recently conducted into debates about access to high cost medicines. We will then involve the audience in a series of group discussions, exploring the following questions:

  • Activity 1: Is it desirable and possible to ‘push back’ against demands for enhanced access to high cost medicines? (20 minutes)
  • Activity 2: How might a bioethicist might conceptualise, and weigh up, the risks and benefits of ‘accelerated access’ to high cost medicines? (20 minutes)
  • Activity 3 (Time permitting): How might a bioethicist might think about resource allocation decisions in a manner that accounts for values other than safety, efficacy and cost-effectiveness?

Biographies

Narcyz Ghinea is a researcher at the Centre for Values, Ethics and the Law in Medicine investigating how to improve the funding of high cost cancer medicines in Australia.

Jessica Pace is a pharmacist and PhD candidate at the Centre for Values, Ethics and the Law in Medicine. She has undergraduate degrees in biochemistry, law and pharmacy. Her doctoral research is examining the ethics of debates surrounding accelerated access to medicines. 

Claudia Harper is a science and law student at the University of Sydney. She has broad research interests in resource allocation in the health system and access to medicines.

Wendy Lipworth is a bioethicist and health social scientist at the Centre for Values, Ethics and the Law in Medicine, University of Sydney. Her research, which is supported by a NH&MRC Career Development Fellowship, focuses on the ethics and politics of health technology innovation.

About the Association

The Australasian Association of Bioethics and Health Law (AABHL) was formed in 2009.

It encourages open discussion and debate on a range of bioethical issues, providing a place where people can ask difficult questions about ideas and practices associated with health and illness, biomedical research and human values.

The AABHL seeks to foster a distinctive Australasian voice in bioethics, and provide opportunities for international engagement through its membership, journal and conferences.

Members come from all the contributing humanities, social science and science disciplines that make up contemporary bioethics.

Many members have cross-disciplinary interests and all seek to broaden the dialogues in which all members of the wider community ultimately have an interest.

The AABHL is a supportive, creative and challenging community that provides a rich source of continuing academic refreshment and renewal.

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