The provincial health department is refusing to provide a potentially lifesaving cancer drug to patients in the Eastern Cape – despite it being offered for free.
A Port Elizabeth man, who had waited in vain for the drug since December, is believed to have died two months ago.
The chemotherapy drug, Alemtuzumab, costs between R130 000 and R160 000 and is widely approved for treating leukaemia worldwide, including by the Federal Drug Administration in America, but it is not registered in South Africa.
Despite the Medicines Control Council giving written permission for the drug to be used, in cases where all other chemotherapy drugs have failed, the Eastern Cape Department of Health will not order it as it is an “off-licence” drug.
Leukaemia patients needing it have not been denied it anywhere else in South Africa, according to Cole Cameron, spokesman for the haematological support services group, Igazi Foundation.
Despairing Eastern Cape cancer patient Louis Sadovsky, 61, who was diagnosed with T-cell chronic lymphocytic leukaemia about four years ago, said: “I won’t lie to you, there are days I think to end it all.”
His specific cancer attacks the skin and has left his face badly disfigured.
“In desperation last year, Dr Neil Littleton [head of the haematology department at Provincial Hospital in Port Elizabeth] wrote to the manufacturers of Alemtuzumab.
“They said they would provide it for free.”
Three, including the one who died, were from Port Elizabeth.
The other nine – who were treated in Gauteng, KwaZulu-Natal and the Western Cape – received the drug.
“Ninety percent of my body is covered in lesions,” he said.
“My face is disfigured. My eyes can hardly open. My hair is falling out. I have lost an eyebrow and the other is going.
“In the supermarket, children run away from me, screaming.”
“There is nothing else they [doctors] can do for me. This drug is my final hope.
“It is the most terrible thing in the world to know that there is a silver lining but you are being barred from reaching it.”
Phathekile Tambo, 63, was diagnosed with chronic lymphocytic leukaemia in 2010.
The disease causes too many white blood cells to collect in the bone marrow, blood, lymph tissues and other organs of the body.
Tambo said he was frustrated with the provincial health department.
“The other treatments … did not work,” he said.
“In December last year, Dr Neil Littleton said there was a new drug – and it was free.
“Maybe if they told us there was no money I would understand better, but this is free.
“I have written a letter, but they [health department officials] have not even responded.
“Even when I went to Bhisho [in December], they would not let me speak to the correct person.
“With this disease, I look like there is nothing wrong with me some days. Other days, I can’t even get up.”
Last month, the health department’s provincial treatment committee decided it would no longer approve the use of the drug for leukaemia because it was only registered with the Medicines Control Council for multiple sclerosis treatment.
Haematologists worldwide are, however, prescribing it as a “last-resort” chemotherapy for certain types of lymphoma.
In a widely distributed e-mail, Eastern Cape Department of Health pharmaceutical services head Ayanda Soka set out his reasoning for refusing access to the drug.
“Currently, its use in haematology could be regarded as off-label use and therefore requires endorsement for off-label use,” he wrote.
“Hospitals must also comply with policies related to acceptance of donations even though the medicine is provided free of charge.
“Effectively, the motivation as it currently stands prevents the [department] from approving it and, therefore, we are in no position to ask the depot and/or facility to open the account or register with the access programme.”
Provincial health spokesman Siyanda Manana said Alemtuzumab was not on the department’s approved list of drugs, which was why they were refusing to order it despite the motivation written by Littleton.
He said they were willing to learn from other provinces how their donations policies worked.
Cameron said they were incensed by the Eastern Cape’s stance.
“The Eastern Cape Department of Health, by not allowing these state patients access to a free drug, with no cost to the taxpayer, is effectively signing their death warrant,” he said.
He confirmed that one person had died so far in Port Elizabeth while waiting for the drug.
National health department spokesman Joe Maila said their hands were tied.
“Deciding on whether to approve treatment is the job of the provincial treatment committees,” he said.
Monique Nel, from Sanofi, who manages requests for Alemtuzumab, said she received requests for the drug from all over South Africa.
“We applied for and received approval for the use of Alemtuzumab in oncology from the Medicine’s Control Council every six months,” she said.