Rio de Janeiro child awaits essential rare disease medication

Lara Emanuelly Egito dos Santos, an 8-year-old girl with short bowel syndrome, is facing a shortage of the high-cost medication teduglutide 5mg in the state of Rio de Janeiro.

The Rio de Janeiro State Health Secretariat (SES-RJ) stated that while an initial dose was provided in May, subsequent deliveries have been delayed due to logistical issues with suppliers. The first distributor failed to meet an August deadline, leading the Secretariat to contract a new distributor on September 3. However, the new company cited manufacturing laboratory delays and scheduled delivery for September 25.

Due to the urgency of the patient's condition, the SES-RJ has notified the judiciary and requested that the distributor be ordered to deliver the medication immediately. The family has also filed a lawsuit against the state to ensure the continuity of the treatment.