It’s hard being diagnosed with a rare disease in a poor corner of the world. Where do you go to get treatment? How can you be sure that you are getting the best possible care? What will happen if other members of your family face the same prognosis; what will your collective future be?
Deep in the heart of Curimata, a tiny city in Brazil’s poorest state, four generations of a single family faced this very dilemma when they were diagnosed with Fabry disease, a condition that can be characterized by tremendous pain, kidney complications, cardiac manifestations, vertigo, nausea, and other symptoms. The only hospital in the area was ill equipped to handle these 41 family members. A care program that could provide access to proper care, local treatment infusion services, laboratory support, and a patient association was both sorely needed and seemingly impossible.
That’s until Shire stepped in and paved the way for comprehensive and life-changing care. It took a dedicated team effort of collaboration across the company but in the end, says Roberto Alvarenga, the Vice President and General Manager of Shire HGT in Latin America, four generations of a family are leading better lives because we heard of their plight and wanted to help.
“Shire had the chance to do something powerful and impactful,” Alvarenga says. “We don’t just create medicine. We overcome obstacles to make it accessible to those who need it.”