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Rare Diseases South Africa raising awareness around battle to access funding

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Patient advocacy group, Rare Diseases South Africa, is raising awareness around why some patients with rare diseases battle to access funding from their medical aids for treatment.

They have started the campaign, #DearMinisterOfHealth , in a bid to build alliances within civil society, policy makers and patients.

Founder of the group, Kelly du Plessis says there is a need for civil society to raise awareness to save millions of rands in treatment for their patients.

Du Plessis says, “So what we have seen is happening quite significantly is that due to the resource constraints at the council for medical schemes. The appeals boards are not able to meet as often as they would like and they actually only meet every second month.”

“As a result of that, we are seeing these schemes who are asked to fund expensive medications, using this as an excuse because it gives them an opportunity to waste time. Patients are not able to pay for those medications upfront out of pockets, so those patients just get sicker and die in the time that they wait and that waiting period in cases exceeds 518 days, ” she adds.

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