Alrene receives first dose of medication

2015-07-15 06:00
Six-year-old Alrene Scheepers received her first Enzyme replacement treatment on Monday at Provincial Hospital. Here she is with her mom and dad Renee en Alfonso Scheepers.

Six-year-old Alrene Scheepers received her first Enzyme replacement treatment on Monday at Provincial Hospital. Here she is with her mom and dad Renee en Alfonso Scheepers. (THEO JEPTHA)

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IT’S all systems go for little Alrene Scheepers who received her first dose of enzyme replacement treatment on Monday after a 19-month-long struggle to receive the medication.

There were no tears from the six year old as the nurse pushed a needle into her small arm.

Speaking to PE Express on Monday, Alrene’s father, Alfonso, could not contain his emotion and was close to tears as the realisation of his dream for his youngest daughter was finally coming true.

Little Alrene was diagnosed 19 months ago with type 1 Gaucher’s disease, a chronic illness that is caused by an enzyme not working efficiently to break down a certain type of fat.

The emotional journey led the family through a long fight with Dora Nginza hospital who delayed treating the little girl as the hospital said they were unable to locate funding for the R36 000 a month enzyme replacement treatment.

After 18 months and massive local media coverage, the hospital’s CEO, Dr Nandipha Qangule, and the Eastern Cape Department of Health (DoH) signed off on the order but a further delay was caused by the hospital’s pharmacy who delayed the process for a month owing to lack of funds.

“This is the happiest day of my life. It feels like all the phone calls and long meetings with hospital administrators were not for nothing. She is finally getting the treatment she deserves and as a father and provider it makes me happy to see this realisation,” said Alfonso.

According to Dr Lungile Pepeta, Alrene will undergo enzyme replacement biweekly through a drip transfusion at Provincial Hospital. “The system is not complicated and she will be able to travel home after we administer her drip. On Monday we had to monitor her heart because her spleen had grown enormously and it was affecting her organs. After this week, we are sure that the process will be relatively smooth and we don’t expect any complications,” said Pepeta.

Qangule said Alrene was taken to the Provincial Hospital’s Paediatric Oncology unit because there was no space at Dora Nginza hospital.

Qangule said she has had back-to-back meetings with pharmaceutical company Sanofi S.A. and the Rare Disease Society in order to come up for a discounted price in Alrene’s medication. “When I came in as the CEO in September, our budget by that time was running on empty and from view of cost we couldn’t accommodate Alrene.

When we received our new financial year’s budget we only had a 1% increase and unfortunately the need of public health always outstrip available resources. It’s a difficult decision to spend on one patient when there is a need to spend on so many.”

Qangule said Genzyme, who produce the enzyme which Alrene will need for her entire life, will sponsor her medical aid after a year’s waiting period.

“We will provide treatment until the expiry of that year. What makes this drug expensive is that it’s not in the essential drug list but it is bought outside the normal drug list. Initially, quotations were R34 000 and then they rose to R36 000 and we calculate that cost will be more than R40 000 by the end of the year because of exchange rates,” said Qangule.

According to DoH spokesperson Sizwe Kupelo the department has only committed to 6 months’ funding for Alrene’s medication and Dora Nginza Hospital, as well as Provincial Hospital, will have to locate funding for the remainder of the treatment

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