Brazil Senate hearing addresses rare lung disease challenges

A public hearing held by the Senate Human Rights Commission highlighted the challenges faced by patients with lymphangioleiomyomatosis (LAM), a rare and severe lung disease that predominantly affects women. Experts and officials noted that late diagnosis and difficulties accessing treatment centers are primary obstacles for those suffering from the condition.

While the medication sirolimus is provided free of charge through the Brazilian Unified Health System (SUS) for adult patients, many struggle to access or maintain continuous treatment. It is estimated that there are approximately 3,000 cases of LAM in Brazil, but only about 500 have been officially diagnosed.

Senator Damares Alves emphasized that while the Ministry of Health has established protocols and approved the availability of medication, existing laws and technologies do not automatically guarantee effective and timely care for every individual in need. Representatives from the Ministry of Health stated they are working to strengthen primary care to improve the identification of rare diseases.