Reader ‘s opinion Are the rights of rare children realized?

There is a cure for a rare disease, but in Finland the Board of Prices for Medicines considers it too expensive.

The treatment of rare diseases in Finland raises questions. Recently, for example, the situation of drug treatment for cystic fibrosis has been discussed in public. In Finland, this serious, progressive and incurable disease is treated only by responding to the symptoms of the disease, although since 2012 there have been new drugs available for the disease that are able to treat the root cause of the disease itself.

The latest drug, launched in 2019, is expected to significantly improve patients’ quality of life and extend life expectancy by up to 20 years. In Finland, the Medicines Price Board has so far made negative decisions on the substitutability of these medicines. The effectiveness of the drugs has not been questioned, but the price has been considered too high. The solution involves a heavy mental and physical burden of care for both patients with cystic fibrosis and their close associates, parents caring for their children. To make matters worse, cancer treatment could be compared to focusing only on pain relief and facilitating the rest of life, rather than trying to prevent the spread of tumors. It is a completely different thing to treat the root cause of the disease than just the symptoms.

There have been many openings for discussion on this issue. Finland currently has an extremely tight budget for the treatment of rare diseases. The situation should be rectified as a matter of urgency.

During Children’s Rights Week, I reflect on the issue in terms of the realization of my own children’s rights. What do I answer to my child when he asks why his illness is not treated in Finland? How do I justify this when it is known that new medicines have been approved for substitution in Sweden, Norway, Denmark, Germany, France and so on – in fact, in almost all Western European countries?

The Finnish Constitution, EU regulations and the UN Convention on the Rights of the Child state that all citizens should have the right to adequate and equal care. Are the rights of children with rare diseases sufficiently implemented in Finland?

For my child

We exceptionally publish the article under a pseudonym.

Reader opinions are speeches written by HS readers, selected and delivered by HS editorial. You can leave a comment or read the principles of writing at


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