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Fight to survive

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04 August
๐—ง๐—ต๐—ถ๐˜€ ๐˜€๐˜๐—ผ๐—ฟ๐˜† ๐—ผ๐—ฟ๐—ถ๐—ด๐—ถ๐—ป๐—ฎ๐—น๐—น๐˜† ๐—ฎ๐—ถ๐—ฟ๐—ฒ๐—ฑ ๐—ผ๐—ป ๐Ÿญ๐Ÿฌ ๐—๐˜‚๐—น๐˜† ๐Ÿฎ๐Ÿฌ๐Ÿฎ๐Ÿฎ. 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 monthโ€™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 theyโ€™re forced to wait?
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๐—ง๐—ต๐—ถ๐˜€ ๐˜€๐˜๐—ผ๐—ฟ๐˜† ๐—ผ๐—ฟ๐—ถ๐—ด๐—ถ๐—ป๐—ฎ๐—น๐—น๐˜† ๐—ฎ๐—ถ๐—ฟ๐—ฒ๐—ฑ ๐—ผ๐—ป ๐Ÿฎ๐Ÿฏ ๐—๐˜‚๐—น๐˜† ๐Ÿฎ๐Ÿฌ๐Ÿฎ๐Ÿฏ. Itโ€™s a story that spans continents โ€“ from Europe to the USA, and to Kuruman in the Northern Cape. In 2004, Russian oligarch Viktor Vekselberg arrived in South Africa looking for manganese mining opportunities and a BEE partner to win the mining rights. Several politically connected entities jostled for the privilege, but one consortium stood out. It included the ANC's investment holding company, Chancellor House and the little-known Kuruman Community Trust. The consortium won the mining rights and Vekselberg invested $350 million to build the mine. Today, the mine is the third-largest manganese producer in the world and the shareholders should all be reaping the benefits. But that hasnโ€™t been the case for the poor local villagers who are beneficiaries of the Kuruman Community Trust. While the politically connected earn millions from the mine, theyโ€™ve been reduced to little more than R1000 a year and an annual Christmas hamper. Believing they were simply used to acquire the mining rights, they survive on pensions and government grants in villages with no running water, no inside toilets, and no jobs. In this two-part investigation, Carte Blanche examines how the poor and disenfranchised were used to line the pockets of the rich. .. Your favourite episodes are now available on Carte Blanche: The Podcast: https://linktr.ee/carteblanchetv