In recent weeks, cystic fibrosis (CF) has been in the headlines because of a court case about access to new treatments for the genetic condition. After having reported on the court case, Catherine Tomlinson now unpacks how CF is diagnosed in South Africa and why so many cases here fall through the cracks. The good news, she reports, is that efforts are underway to establish a national infant screening programme.
Cystic fibrosis (CF) is a debilitating and often deadly disease. Until recently, the only treatments for its symptoms were difficult to administer and time-consuming. Life-changing new treatments that dramatically improve the prognosis for people with the disease have been developed, but they are expensive and Vertex, the US company making the drugs, has decided against registering the drugs in South Africa. Cheri Nel, a woman living with CF, is now taking Vertex on in a South African court. Catherine Tomlinson unpacks the details.
Little is known about the number of people in South Africa who are living with rare diseases. In fact, there is no recognised definition for rare disease in the country, contributing to inadequate record-keeping and very little data on prevalence, treatment options, and support structures. Laura Owings reports.
