My 4 year old daughter has Primary ImmunoDeficiency & has been on Polygam since Mar 2011. Recently her health deteriorated & her paediatric immunologist (top expert in the country) recommended an increase in dose/frquency of her polygam as well as Zithromax on chronic, Pediasure supplementation & vaccines (pneumovax & flu vaccine). On 18-Feb-13 I submitted a motivation from the doctor as well as a detailed email. On 28-Feb we got an sms to say that our application had been received & was being processed (note: 10 days just for an acknowledgment of receipt!). On 8-Mar we received the decision which approved Zithromax on chronic, but no change was made to the Polygam at all & there were several mistakes on the card - no reason for this was sent to the doctor.
On 11-Mar I called the chronic medicines dept where after a long call I was told it was an oversight - they did "not notice" the request for the increase in Polygam dose! I was told it would be handled urgently & I could expect feedback by Tuesday.By today (Thursday) I still had not heard anything so I called again. Lucky was VERY unhelpful-all he would say is that it is "in process" My daughter's health is being jeopardised!
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