Desperately ill Alrene yet to receive medication

2015-07-08 06:01
Renee Scheepers with her daughter, Arlene.

Renee Scheepers with her daughter, Arlene. (WERNER HILLS)

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THE life of a critically ill 5-year-old girl from Booysens Park hangs in the balance as her parents await the outcome of the government health department “procurement procedures” for the medication she needs.

Alrene Scheepers has been waiting for 19 months for her much needed medication to finally be purchased by Dora Nginza Hospital.

Alrene suffers from type 1 Gaucher’s disease, a chronic illness that according to is caused by an enzyme not working right to break down a certain type of fat. The fat then builds up, especially in the liver and spleen. Alrene now needs enzyme replacement treatment.

Two weeks ago the Dora Nginza hospital finally gave the Scheepers family the thumbs up for the expensive medication.

Their relief was short lived. According to Alfonso and Renee Scheepers the hospital’s pharmacy is scrambling to find the money for the medication which can cost between R30 000 and R300 000.

“They said their budget can’t cover my daughter’s medication. Dora Nginza hospital’s pharmacy manager then said because Alrene is an oncology patient she had been moved to Provincial hospital and they had asked provincial hospital to help fund her medication. It seems as though they are just stalling and the more we wait the fewer chances she has to survive,” said Alfonso.

Eastern Cape Department of Health spokesperson, Sizwe Kupelo, said the hospital had initiated the emergency procurement process for the medication.

“The Department of Health has the responsibility to provide health care services to all patients. Given the small target population, these treatments are enormously costly on a per-patient basis. Treatments for Fabry disease and Hurler-Scheie disease (also called mucopolysaccharidosis I) are already licensed, and others are on the way. This brings us face-to-face with a major ethical dilemma. We do not put a price on human life. Yet health-care resources are a zero-sum game. What is spent on one disease cannot be spent on another,” said Kupelo.

But this didn’t sit well with Alfonso who said, “To me it sounds las though they are putting my kid’s enzyme on hold. If they say that it’s an emergency procurement why does it take so long?”

Kupelo said Alrene had rights which they took seriously and would provide the best service. “There are instances that some conditions by their nature and their severity and the very high costs related to their treatment possess and have limitations on how we could make a difference in the final outcome of the disease. Is it better to treat one child with Hurler-Scheie disease or to provide good prenatal care to 100 women who might not otherwise obtain it, or for that matter, to feed 1 000 malnourished children? These are difficult decisions that will be forced on us as enzyme replacement and other high-technology therapies come of age,” Kupelo said

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