Johannesburg – A 41-year-old mother lives in pain fearing that her 14-year old twins, who are suffering from a rare incurable skin cancer, could die.
Phumzile Mkhonza’s children Lwandile and Lwanele, who were diagnosed with xeroderma pigmentosum (XP) at the age of two, have been undergoing treatment at Steve Biko Academic Hospital.
However, officials at the hospital recently told Mkhonza from Bethal in Mpumalanga that there was nothing they could do because there was no money for the treatment to minimise the impact and future complications caused by the rare disease.
According to Mkhonza, the chemotherapy to extend her children’s lives is expensive because it needs to be imported.
The disorder makes the skin extremely sensitive to sunlight and causes premature skin ageing, making the sufferer prone to developing skin cancers.
“I have been in pain for so many years because of the boys’ condition, but this time around it is worse because every day I wake up knowing that I’m waiting for the death of my children to come.
The cancer affected them from the neck to the head.
“One of the boys had his eyes removed, while the other one is partially blind. Now the disease affected their mouths, they are even failing to eat.
“To make things worse, I am unemployed and live with my boys in an RDP house. I have to look after them all the time, that is why I can’t even afford to go out to look for a job. We are only surviving with their R3 600 disability grant, which is not enough.”
Mkhonza said she prays every day for the well-being of her kids.
Professor Mahlatse Kgokolo, the doctor who has been treating the twins, confirmed that the chemotherapy needed to assist the twins was very expensive.
“Newer modalities of treatment include anti-PD1 inhibitors like Nivolumab, which is a very expensive, but effective type of treatment. Currently, we need Nivolumab for one of the twins, drug companies can assist, in fact, we wanted the patient to be part of a clinical trial but he did not meet the criteria.”
Kgokolo said there were 15 patients in South Africa, 13 black (two adults and 11 children) and two white adult patients.
She said the type of skin cancers that commonly occur in African patients are squamous cell carcinomas (which are aggressive tumours) and to a lesser extent basal cell carcinomas (less aggressive tumours).
White patients commonly developed melanoma skin cancers, but fewer squamous and basal cell skin cancers, she said.
The treatment depends on the clinical presentation, but absolute sun protection helps to prevent skin damage and the development of skin tumours, said the doctor.
“Once the patients develop skin tumours, the treatment at that stage would be excision of the tumours and or chemotherapy depending on the tumour stage.”
When contacted for comment, National Department of Health spokesperson Popo Maja did not agree or deny that there was no money to treat the boys.
“Treatment for XP is focused on managing the symptoms, there is no cure for the disease.
“People with XP are advised to avoid cigarette smoke, sunlight and other forms of ultraviolet radiation exposure, and they may need regular screening for cancer,” said Maja.
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