For some rare diseases that used to be hardly treatable, there now exist highly effective but sometimes extremely expensive drugs. Zolgensma, for example, a gene therapy drug to treat spinal muscular atrophy, cost more than 2 million euros per single dose when it was launched on the German market. This makes it the most expensive medicine in the world. Kaftrio, a highly effective drug to treat the symptoms of cystic fibrosis, costs around 275,000 euros per patient per year. More high-priced medicines are expected to be developed in the coming years.
Such steep prices raise a number of ethical challenges. For example, given the limited resources in a health care system based on solidarity, the interests of all insured persons to receive the best possible treatment, but also the demands of pharmaceutical companies to refinance research investments, must be weighed against the requirement to prevent boundless increases in health care costs and, in particular, health insurance contributions. Ethical questions arise not only with regard to decisions on access to these new medicines, but also concerning transparent criteria to assess the effectiveness, suitability and economic efficiency of medical interventions.
Considering the need for sustainable procedures despite limited resources, the German Ethics Council, on the occasion of its annual meeting in 2022, would like to stimulate ethical debate on how to deal with issues surrounding new expensive medicines in solidary and fair ways.
The conference will focus on the following guiding questions:
- How does the availability of expensive medicines affect the medical routines of patients and caregivers?
- What degree of improvement in individual treatment quality can justify the launch of an expensive drug?
- What leads to high prices and how can they be justified in a solidarity-based health care system?
- How can the availability and fair allocation of cost-intensive medicines be improved?
- How can fair allocation also be achieved at an international level, given global disparities in access to resources as well as diverse health care systems?
Please switch to the German version of this website to see the programme and a video recording of the event.