Conference: Hard Choices in Nordic Health Care – Expensive treatments and priority settings

The Nordic Committee on Bioethics is organizing a workshop on hard choices in Nordic health care in Stockholm 16 November. The workshop is aimed at hospital directors, hospital ethics committees, directorates of health, pharma industry, policy makers and patient organisations.
When a patient is diagnosed with a rare diagnosis or a mortal disease, medicine and life-prolonging treatment should be offered. However, the required medicines and treatments are often very expensive, and economic resources are limited. This presents public health care with some hard choices. There is a strong moral justification not to deny treatment because of cost; however, given limited resource within public health care we may have to choose whom to treat or whether to cut costs within other needed services instead. How should we make these decisions and who should decide? Which ethical principles should guide our choices?

The Nordic countries differ in practices and regulatory framework on how to deal with these questions. To discuss practices and ethical dilemmas, the Nordic Committee on Bioethics invites high-level stakeholder representatives to this workshop. At the workshop, participants are invited to share their experiences and lessons learned by discussing hard choices within health care and how best to address these burning issues. Three cases demonstrating the current urgency of the debate have been selected for presentation at the workshop. These will provide a framework for discussions on how the Nordic countries can work together to enhance a common understanding of ethical issues, as well as facilitate discussions about health care policies and patient services in the Nordic countries.

The workshop is by-invitation only. If you have any inquiries, please contact secretary Hanne Silje Hauge


10.00-10.10       Welcome and Introduction    

Janne Nikkinen, Chair, Nordic Committee on Bioethics

10.10-10.45           Ethical Principles – Prioritizing New Treatment Options    

Lars Sandman, New Treatment Council, Sweden

10.45-11.15 National Initiatives – Best practices and lessons learned from the Scottish initiative to better handle new and expensive drugs in cancer treatment

Alan Macdonald, Vice Chairman, Scottish Medicine Consortium

11.15-11.45 Comments to the Scottish Experience from Sweden and Norway

Stefan Back, President, New Treatment Council, Sweden

Ole Alexander Opdalshei, Deputy Secretary General, The Norwegian Cancer Society

11.45-12.45       LUNCH


12.45-13.30       Case Studies on Priority Settings and Ethical Principles

Case 1: Expensive drug can keep severe kidney disease under control

Carl-Gustaf Elinder, Chair, Evidence-based Medicine, Stockholm City Council

A man developed Hemolytic Uremic Syndrome (HUS) and was transplanted twice after recurrent disease. However, after his third transplantation he received eculizumab (Soliris) every second week without rejection or recurrence of disease. The yearly cost for Soliris is 3,4 million SEK.

Case 2: Patient access to investigational drugs

Steinar Aamdal, Chair, Nordic Network for Early Cancer Trials and member of Nordic Trial Alliance

Today, many seriously ill cancer patients do not have satisfactory standard treatment options. Many patients wish to be enrolled in clinical phase I and early phase II trials to gain access to new investigational therapies. In the Nordic countries, however, the number of these trials are limited. How can we work together to ensure the patients access to new investigational therapies?

Case 3: A cure for Hepatitis C?

María Heimisdóttir, Chief Finance and Information Executive, Assistant Clinical Professor, The National University Hospital of Iceland

A new and highly effective treatment for Hepatitis C (usually a 12 week course resulting in virus eradication in up to 95-100% of patients) is now available but at a cost of US$ 70.000 (EUR 61.000) per patient. Authorities in Iceland, where 800-1000 individuals are infected, have not allocated funds to pay for this treatment. Despite this, the National Hospital decided to treat those patients who were in the direst need, although funds were not secured for the project. This was following instructions from the Director of Health in Iceland.

13.30-14.20       Panel session 1

Priority settings from the micro perspective – the patient, doctor and community

Moderator: Göran Elinder

Gerður Gröndal, Associate Professor in Clinical Rheumatology, The National University Hospital of Iceland

Niels Høiby, Professor, University of Copenhagen and Rigshospitalet, Politician

Malin Ljung-Eiborn, Member of Rare Diseases Sweden

Ole Alexander Opdalshei, Deputy Secretary General, The Norwegian Cancer Society

Samuli Saarni, Medical Director, Hospital District of Southwest Finland

14.20-14.50       Coffee break

14.50-15.40       Panel session 2

Priority settings from the macro perspective – policy-making perspective

Moderator: Salvör Nordal

Páll Matthíasson, CEO, The National University Hospital of Iceland

Niels Qvist, Professor, Vice Chair, Organization of Medical Societies

Anders Blanck, Director General, The Swedish Association of Pharmaceutical Industry

Sari Koskinen, The Finnish Ministry of Social Affairs and Health

15.40-16.00       Sum up and next steps; the way forward        

Ingemar Engström, The Nordic Committee on Bioethics