𝗧𝗵𝗶𝘀 𝘀𝘁𝗼𝗿𝘆 𝗼𝗿𝗶𝗴𝗶𝗻𝗮𝗹𝗹𝘆 𝗮𝗶𝗿𝗲𝗱 𝗼𝗻 𝟭𝟬 𝗝𝘂𝗹𝘆 𝟮𝟬𝟮𝟮. Treatment for rare diseases can be staggeringly expensive. But when medical aid schemes refuse to pay, families are in for the fight of their lives. Carte Blanche explores the bitter conundrum families are confronted with as they try to access life-saving medicines for a group of rare genetic conditions called lysosomal storage disorders. A single month’s supply can cost hundreds of thousands of rands. The good news for patients is that these diseases are Prescribed Minimum Benefit conditions, which means that according to the Medical Schemes Act, medical aid schemes are obligated to cover treatment. And yet in case after case, medical aids refuse, dragging patients and their families through lengthy hearings with the Council for Medical Schemes. To date, the process has always resulted in a decision in the patient's favour. But at what cost to the patients while they’re forced to wait?