Although rare diseases may be individually rare, they are collectively common. In Switzerland they affect over 500,000 people – more than diabetes. The issue has therefore been a focus of the Federal Council and Parliament for years.
Prevalence
A disease is deemed to be rare if it affects no more than five out of every 10,000 people. Between 7,000 and 8,000 rare diseases have been identified worldwide. While the number of people suffering from each individual disease is very small, there are many such diseases, so it is likely that around 7% of the population is affected. In Switzerland, the number of sufferers is estimated to be more than half a million. This is more than the number of people living with diabetes.
Causes and progression
Many rare diseases have genetic origins. Added to these genetic conditions are rare infections, auto-immune disorders and other types of rare disease. They are often life-threatening or result in chronic invalidity. Many appear at birth or in early childhood, while others don’t emerge until patients are much older. There is still no hope of a cure for the large majority of these rare conditions but there is great potential for research.
Rare diseases in the Federal Council and Parliament
The Swiss parliament and Federal Council have been dealing with the issue of rare diseases since the early 2000s.
- In 2014, the Federal Council adopted the National Rare Disease Policy, which sought to improve care and treatment for people living with rare diseases throughout the course of their illness. The policy expired in 2019, but the FOPH continues to support measures that were not implemented in full. More information is available here: ‘Rare diseases in Switzerland and the national policy’.
- In 2021, the Federal Council published a report on the legal basis and financial framework to ensure rare disease care.
- The policy and report flowed into a series of practical measures and parliamentary initiatives. The motions 21.3978 ‘For long-term financing of public health projects in the National Rare Disease Policy’ and 22.3379 ‘Strengthening and funding the patient organisations in the area of rare diseases’ call for a specific legal basis to be established.
Challenges in rare disease care
In its report on the legal basis and financial framework for ensuring rare disease care, the Federal Council stated in 2021 that the legislative and financial courses of action were largely focused on care, coverage of treatment costs, and providing information. The Federal Council also underscored the complexity of the health system, which the area of rare diseases clearly illustrates, and emphasised the importance of respecting the legally defined authorities and responsibilities.
In principle the cantons are responsible for healthcare provision. They also oversee hospitals, care homes and outpatient care providers. The cantons and their joint body, the Swiss Conference of the Cantonal Ministers of Public Health (GDK) are therefore key partners in the implementation of measures in the area of rare diseases.
The report also stated that the previous approach – whereby each actor provided the necessary funds within its authority for its own implementation activities – had brought some successes. However, the Federal Council stressed that this approach would come up against limitations in the medium term and that the effectiveness of the National Policy could be compromised. A particular focus of the Federal Council was the creation of specialised care delivery structures, and the provision of information and guidance for those affected, their families and professionals, particularly through patient organisations.
Outlook
During their deliberations on the Federal Council report, the National Council and Council of States addressed these concerns and referred the motions 21.3978 ‘For long-term financing of public health projects in the National Rare Disease Policy’ and 22.3379 ‘Strengthening and funding the patient organisations in the area of rare diseases’ to the Federal Council. The Federal Assembly therefore mandated the Federal Council to establish a legal basis in the area of rare diseases. This is about ensuring the long-term implementation of the measures from the National Rare Disease Policy by the participating healthcare organisations and reinforcing patient organisations. The work is under way.
Last modification 14.04.2024
Contact
Federal Office of Public Health FOPH
Health and Accident Insurance Directorate
Tariffs and Principles Division
Schwarzenburgstrasse 157
3003
Bern
Switzerland
Tel.
+41 58 462 37 23