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Paraguay's rare disease patients 'agonizing' amid critical drug shortage
🇵🇾 Paraguay /Health & Science

Paraguay's rare disease patients 'agonizing' amid critical drug shortage

From ABC Color · () Spanish

Translated from Spanish, summarized and contextualized by DistantNews.

At a glance

News Named sources Context piece
  • Patients with rare and chronic diseases in Paraguay face a critical health crisis due to a severe shortage of essential medications.
  • The Paraguayan Federation of Patients with Rare Diseases (Fepper) blames President Santiago Peña and the Ministry of Economy for a lack of budget and failure to secure necessary funding.
  • The lack of medication has halted treatments for months, causing patients' conditions to worsen and putting their lives at risk, with some treatments costing over $20,000 monthly.

Patients with rare and chronic diseases in Paraguay are enduring an "unprecedented" crisis, with a critical shortage of essential medications threatening their lives. The Paraguayan Federation of Patients with Rare Diseases (Fepper) reports that some patient associations have gone eight months without receiving necessary treatments, a situation described as the worst ever.

We have never been this bad. This began to be felt in November of last year. There are associations that have been without medication for eight months.

— Vanesa FlorentínPresident of the Paraguayan Federation of Patients with Rare Diseases (Fepper), describing the severity and duration of the medication shortage.

The federation blames President Santiago Peña and the Ministry of Economy for the dire situation, citing a lack of budget and a failure to secure necessary funding. Fepper President Vanesa Florentín stated that while dialogue exists with the Ministry of Health and the Social Security Institute (IPS), the core issue is the absence of budget availability certificates. She noted that the Minister of Economy, Oscar Lovera, has not responded to their requests.

We are all very expensive patients. We cannot do a bake sale or a hamburger sale to cover our medication. That is impossible. In some pathologies, that is waiting for death.

— Vanesa FlorentínHighlighting the unaffordable cost of treatments for rare diseases and the impossibility of self-funding.

This medication scarcity forces patients to halt their treatments, leading to the resurgence of symptoms and a decline in their health. The high cost of these essential drugs, ranging from $750,000 to over $20,000 monthly, makes it impossible for patients to afford them independently, turning the lack of medication into a potential death sentence.

We meet with Health, they receive us well, but things are not solved fundamentally because there must be a budget. The same situation at IPS. The Minister of Economy (Óscar Lovera) has not received us, he does not respond to our requests, neither by cell phone nor by email.

— Vanesa FlorentínExplaining the bureaucratic hurdles and lack of response from the Ministry of Economy.
DistantNews Editorial

Originally published by ABC Color in Spanish. Translated, summarized, and contextualized by our editorial team with added local perspective. Read our editorial standards.

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