After the Ombudsman’s Office filed an writ of amparo in favor of two sisters suffering from Pompe disease, the Costa Rican Social Security Fund (CCSS) said that the treatment has no curative properties.
In addition, they argue that it can trigger additional risks for patients.
Pompe disease is classified as a “rare disease”. It is a metabolic disease and it has a genetic predisposition that causes pain in the legs, the heart, liver and lungs.
It is an illness characterized by the accumulation of compounds within the cells that affect muscle tissue.
Both patients have lived without this drug and so far, they’ve had a normal life, dealing with the disease. Currently they present muscle weakness and they are receiving all the palliative care provided by the CCSS to patients with incurable diseases,
stated CCSS’ specialists.