Karlsruhe rules on medication cost coverage - German Teen with Duchenne Muscular Dystrophy Fights Insurer for Life-Saving Drug in Landmark Court Case

A 19-year-old man with Duchenne muscular dystrophy is taking his health insurer to Germany's highest court in a battle over life-extending medication. The Constitutional Court will decide on Wednesday whether his insurer must cover the cost of Translarna—a drug currently approved only for patients who can still walk. The young man, born in 2004, lost the ability to walk in 2015 and now relies on the court's ruling for access to treatment.

The legal dispute began when AOK Rheinland-Pfalz/Saarland refused to pay for Translarna, arguing it was not approved for non-ambulatory patients. The Mainz Social Court initially sided with the insurer, rejecting the man's claim. However, the Rhineland-Palatinate State Social Court later overturned that decision, ordering the insurer to provide the drug.

The Federal Social Court then intervened, ruling that drug safety must take priority—even in fatal diseases. This left the final decision to the Constitutional Court, which will hear the appeal on Wednesday at 9:30 AM. Translarna received conditional EU approval in 2014 for ambulatory patients aged five and older with Duchenne muscular dystrophy caused by nonsense mutations. The European Medicines Agency (EMA) acknowledged the disease's severity and unmet need but did not endorse its use for non-ambulatory patients. The court's ruling could set a precedent for insurers' obligations in similar cases.

The verdict will determine whether the young man can receive Translarna despite its limited approval. It may also clarify whether health insurers must fund unapproved treatments for terminally ill patients. The decision is expected to have wider implications for those with rare and severe conditions.