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South Africa behind in rare disease readiness

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Rare Diseases South Africa (RDSA) is an NGO advocating greater recognition, support, improved health service and better overall quality of life for people living with rare diseases and congenital disorders in SA
Photo – Rarediseases.co.za 

In what is an already struggling healthcare system, South Africa is falling behind in its readiness to help identify and treat rare diseases against its worldly counterparts. According to Rare Disease South Africa (RDSA) one in fifteen South Africans are affected by a rare disease (RD).

The origins of over 74% of these rare diseases are from genetics. The current state of our healthcare doesn’t offer any solution to this as many individuals and families remain undiagnosed due to South Africa’s lack of genomic technology and research. The inability to quantify South Africans with RD leads to them being of low priority, despite there being four million people who are suffering with a RD in South Africa. The reality is many of these individuals are often neglected and left to deal with it themselves.

One of the biggest problems RD families and individuals face is the expensive costs associated with their journey. According to RDSA it takes around seven years to receive the correct diagnosis. In that period, it is common to encounter doctor hopping and a constant search for symptomatic relief as there is no official diagnosis in the initial stages. It is reported that treatment costs can range from R500 000 to R30 million. Owner of RDSA, Kelly Du Plessis elaborated on the burden of the cost.

“The one [problem] being access to those innovative products which is what is required. These new innovative drugs that have become available and are now being brought into the country are exceptionally expensive. as a result of their lack of use. Meaning that there aren’t enough patients using them, you don’t have the benefit of bulk procurement so that it prevents you from being able to be flexible in terms of pricing.”

Another problem that arises within our healthcare system is the ability to recognize individuals with rare diseases, not only in terms of diagnosis but in terms of the emotional and mental impacts.

Du Plessis shared that they are “continuously engaging the medical healthcare systems and our doctors and encouraging them to recognize that we also need those services”.  Many South Africans are left to suffer in silence either due to the inability to receive the correct diagnosis or they lack the finances to do the appropriate treatments.

The one factor that places South Africa further behind than other countries is that we are without a National Rare Disease Policy or framework. RDSA recently held a symposium whereby they developed a draft policy framework. The policy aims to achieve easy access to appropriate and affordable healthcare services without barriers.

“Our goal is to put South Africa on par with other countries such as the EU, UK, and BRICS, by having a National Rare Disease Policy. Participants concurred that without a Rare Disease framework and policy, South Africa is falling behind other countries and our chance of achieving universal healthcare is diminished,” said Du Plessis.

Closing the gap between South Africa and its western counterparts is no longer just an option but a necessity.

Mariam Mia welcomed Kelly Du Plessis from the NGO Rare Diseases South Africa:

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