South Africans who suffer from the lupus are not able to get access to the only medicine developed to treat the auto-immune disease because it has not yet been registered here.
Although belimumab, known by the brand name Benlysta, was registered in 2011 in the USA, the South African Health Products Regulatory Authority (SAHPRA) has still not given approval for its use in South Africa.
This is according to Susan van der Walt from the Lupus Foundation of South Africa, who has been fighting for seven years to get Benlysta registered.
Lupus is a chronic and complex autoimmune disease where a sufferer’s immune system attacks healthy cells by mistake. It can affect a person’s joints, skin, brain, lungs, kidneys, and blood vessels, causing widespread inflammation and tissue damage.
South Africa treats lupus with steroids, chemotherapy and anti-rejection medication, suppressing the entire immune system, whereas Benlysta targets specific immune cells.
Van der Walt says that, while lupus cases seem to be increasing, there is little awareness about it.
“As a private organisation, we do as much as possible to create awareness but our government needs to get involved and realise that lupus is a huge problem that needs to be addressed. The correct medication should also be registered and made available in the country,” she said.
Women between the ages of 15 and 44 are most likely to suffer from the disease but it can affect anyone.
Rashni Nirvana Harichand (41) had pain on her left hand from the wrist to her fingers. She initially thought she had hurt herself and took pain killers.
“This went on for a few weeks until I could not hold anything with my left hand. The pain travelled all the way from my left breast down to my fingers. The pain felt like pins and needles and was very sensitive.”
She decided to seek medical help and after blood tests was told that she had “Mixed Connective Tissue”.
“I was terrified and did not know what to do. I went for a second opinion and was told that I had Carpal Tunnel Syndrome (CTS) and that I would be fine after an operation.”
But after less than a week on medication for CTS, her body swelled and everything hurt.
“I went for a third opinion and was told I had lupus. Two years later and I am still trying to understand lupus but I am dealing with it on my own terms,” she said.
Attempts to get a comment from the health department were unsuccessful. – Health-e News
An edited version of this story was published by Health24.