Prof Aisling McMahon & Lauren Kane have co-authored a chapter examining the Right to Health and Access to Patented Health Technologies for Rare Disease, forthcoming in a leading international collection on Intellectual Property and Human Rights.

Prof Aisling McMahon & Lauren Kane (Research Assistant, PatentsInHumans Project) have co-authored a chapter entitled “Patents & Access to Health-Technologies in Everyday Healthcare Contexts for Rare Diseases: Implications and Limitations of the Right to Health at the International Level?” which is accepted and forthcoming in a leading international intellectual property volume edited by Prof Paul L.C. Torremans “Intellectual Property Law and Human Rights” (5^th edition, Wolters Kluwer).

The chapter examines the role and impact of the human right to health, and whether and to what extent this right may be used as an avenue by patients (and their families) and States to secure greater access to patented health-technologies in everyday healthcare contexts. In doing so, the chapter considers recent litigation in relation to access to medicines for rare diseases as a case study, including in context of spinal muscular atrophy (SMA), where treatments are becoming available but often at costs that are not affordable to all patients who may need them. The chapter examines the tension between the incentivising role of intellectual property rights by ensuring protection of such rights over emerging health-technologies, with the need to ensure patients and healthcare systems have access to health-technologies where developed, including as part of their realisation of the right to health.

Ultimately, the chapter argues that in order for the right to health to provide an effective avenue at the national level to better balance the respective rights of both patients and intellectual property rightsholders, States must adopt a proactive approach in their engagement with the right to health, including taking strategic and policy actions to ensure reasonable access to health-technologies.

A pre-print and pre-copyedited draft version of this chapter is now available on SSRN here.

This research was developed as part of the ERC PatentsInHumans project (European Research Council (ERC), PatentsInHumans, Project No. 101042147). Views and opinions expressed are, however, those of the authors only and do not necessarily reflect those of the European Union or the European Research Council Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.