Access to rare-disease treatments is under public scrutiny in Denmark.
Jyllands-Posten reports that, during the first nine months of the year, Medicinrådet rejected more than half of new treatments for small patient groups. According to the latest figures cited, Danish patients have access to 18% of EU-approved treatments for rare diagnoses.
The coverage also follows Anton, a young person living with progressive Friedreich ataxia who cannot access the only approved treatment for the condition.
Lif and Sjældne Diagnoser call for debate on the consequences of prioritisation:
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Lif says Denmark must discuss the access level facing people with rare diseases.
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Sjældne Diagnoser says access to new options is important because most rare diseases have no cure or treatment.
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Lif calls for greater acceptance of uncertainty in small patient groups and a new Medicinrådet assessment pathway reflecting their conditions.
The coverage coincides with Lif’s nationwide “Do you get the best medicine?” campaign on access to new and innovative medicines.
Read more at https://www.lif.dk/jyllands-posten-saetter-fokus-paa-adgang-til-medicin-for-sjaeldne-sygdomme/
