After eight months without essential medicines, patients with rare and chronic diseases in Paraguay are facing a situation described as unsustainable by the Federación Paraguaya de Pacientes con Enfermedades Raras (Fepper), which brings together around 20 associations. The organization's president, Vanesa Florentín, said the crisis has worsened since November of last year and that, in many cases, the lack of medication amounts to a death sentence.
According to Florentín, the core problem lies in the absence of Certificados de Disponibilidad Presupuestaria (CDP). She reports that, although Fepper maintains dialogue tables with the Ministerio de Salud Pública y Bienestar Social (MSPBS) and the IPS, the authorities indicate that the final responsibility for the budget falls on the Ministerio de Economía y Finanzas (MEF). The head of that ministry, Óscar Lovera, is said to have neither received the patients nor responded to contacts by phone or email.
The president of Fepper also demanded a response from President Santiago Peña, who, according to her, has not answered requests. "Behind every association leader there are entire families waiting. He has to give an answer to the people. It cannot be that there is money to buy medication but there is money for other superfluous state expenses," Florentín questioned.
The severity of the scenario is heightened by the high cost of treatments, with medications ranging from around 750,000 guaraníes to more than $20,000 per month. Florentín stated that the ongoing tenders are insufficient and serve only a fraction of the demand: according to her, supplies were purchased for 70 people, while the patient population exceeds 350, creating constant competition for the few available units.
Faced with the lack of response from the Executive Branch, Fepper has called a press conference for Wednesday, June 24, at 11 a.m., at the El Granel restaurant, where representatives of the 20 associations intend to expose the situation and demand a guarantee of medication supply for the coming months.