A family in Belo Horizonte, Brazil, is calling out the federal government for failing to comply with a judicial ruling that mandates the provision of Procysbi, a medication necessary for their 7-year-old son Benício, who suffers from nephropathic cystinosis, a rare genetic disease affecting the kidneys and eyes. The medication, which costs approximately R$ 90,000 monthly, has been unavailable to him for the last six months, leading the family to struggle financially after initially relying on crowdfunding efforts to pay for the treatment before receiving a favorable court decision.

Benício was diagnosed with nephropathic cystinosis when he was just eight months old, prompting his family to search for resources to afford the expensive medication. After years of battling to ensure his treatment, they initially succeeded in obtaining a judicial ruling requiring the government to supply the medicine without further financial burden on the family. Despite this order, the Ministry of Health has stated that the medication remains out of stock, and although they plan to provide funds for a direct purchase, the family argues that this is not a feasible or consistent solution for their son's ongoing needs.

This issue highlights the significant challenges faced by families of children with rare diseases in Brazil, where access to necessary medications can depend on legal battles and governmental compliance. The case underscores the need for comprehensive policies and more reliable healthcare alternatives to ensure that children like Benício receive timely and essential medical treatment as mandated by the law, as delays can have serious implications for their health and well-being.