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The CCSS denied a vital medicine to a group of women who suffer from Pompe disease

December 7, 2016 by Staff News Writer

The Costa Rican Social Security Fund (CCSS) denied a vital medicine to a group of women who suffer from Pompe disease. As consequence, the Ombudsman filed an appeal on behalf of them.

Pompe disease is a rare, multisystem, genetic disorder that is characterized by absence or deficiency of the lysosomal enzyme alpha-glucosidase (GAA). it means that a series of conditions in these women’s health prevent them from having a normal life.

The Constitutional Chamber accepted the filed appeal, which aims to order the Costa Rican Social Security Fund (CCSS) to deliver a drug required by two sisters who suffer from Pompe disease.

The institution stated that Pompe disease generates problems in the muscles, heart and lungs, it is difficult for these women to get up, to bent over and perform household chores. In addition, they are forced to move with a cane, with the consequent risk that it represents when mobilizing in public transport, especially when they must go to medical appointments. Furthermore, the problem and the emotional exhaustion that represent to suffer from a rare, incurable disease make them them feel helpless.

It should be noted that in 2014, women filed a writ of amparo in order to request that the CCSS provide them the drug (Myozyme); however, it was not worthy because the Constitutional Court based its decision on the report submitted by the CCSS, that reported alleged risks surrounding the application of the drug, noting that it was still in an experimental phase.

crhoy.com

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  5. Health Officals to Fumigate in La Carpio for Chagas disease
  6. Jiménez: “a disability is a condition, it is not a disease”

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