IT has been 19 months of fighting, dashed hopes and despair while their five-yearold daughter’s condition deteriorated significantly, but all that stands in the way of Vastrap toddler Alrene Scheepers receiving life-saving medication is a signature.
Following a visit by the provincial portfolio committee on health to Dora Nginza Hospital on Friday, Eastern Cape Department of Health spokesman Sizwe Kupelo said the necessary application to procure the enzyme replacement therapy as a matter of emergency was compiled and signed by the hospital’s chief executive Dr Ntombi Quangule.
He said the superintendent- general of the provincial Department of Health Dr Thobile Mbengashe or the depar tment’s bid adjudication committee must still approve the application.
“We are parents as well. We are all committed to helping this child,” Kupelo said.
“Dr Quangule’s first reactions to the request by Alrene’s doctors were not that positive and that is regrettable, but she has now done all that is required of her to do. It was most unfortunate that this was left to the 11th hour.
“All Dr Quangule must do is find the SG and make him approve her application.
She can even phone him and then take a car and go find him so he can sign.” Hospital sources said some difficult questions were asked of Quangule and pharmacy personnel by the Eastern Cape legislature’s portfolio committee on Friday, with members demanding to know why Alrene’s medication had not been ordered.
Members of the committee also said Health Minister Aaron Motsoaledi and Eastern Cape premier Phumulo Masualle wanted to know why Alrene had not been helped.
Following this meeting, Kupelo said the forms were signed and the medication was being ordered in terms of emergency procurement measures.
The Herald understands that while Quangule had prepared her application, it was not sent to the SG by yesterday, leading to an angry confrontation between her and doctors at the hospital. Quangule said the office of the superintendent-general had to authorise the ordering of the medicine.
“Dr Quangule assured me they are trying their best to get an order number by [yesterday] , ” Kupelo said.
Meanwhile, Alrene has been getting sicker and sicker. Her father, Alfonso Scheepers, said Kupelo communicated with them yesterday, explaining what the difficulty was in ordering the medication.
Alrene suffers from a rare genetic condition called Gaucher’s disease. Her body is missing certain enzymes and cannot break down cellular material for re-use.
There is no cure but doctors can effectively treat her with enzyme replacement therapy.
Enzyme replacement therapy is a prescribed minimum benefit all patients on a medical aid must receive.
A benefactor, Don Pillay, will be sponsoring a medical aid for Alrene but there is a year-long waiting period, meaning that the state will have to carry the cost of her treatment for that time.