Limitations on a Life-long Requirement

My son Christian, born with Charge Syndrome and Di George anomalies, was diagnosed with Severe Combined Immunodeficiency since soon after birth – more than 8 years ago. Coupled with many other issues, he has spent more than his fair share of time in and out of hospital.

For many years Polygam, an intravenous immunoglobulin was administered every few weeks to lower his risk of infection. This meant regular hospitalisation, searching for good veins when there weren’t many and 6-7 hours in hospital to sit and wait for the IV to run. And in his earlier years, spent so much time in isolation rooms for fear of infection.

About 18 months ago, we were able to shift from Polygam to subcutaneous immunoglobulin treatment which Discovery funded through PMB and approved. Subcutaneous infusions allow for me to administer in our home on a weekly basis, while he sleeps and this reduces infusion down to 3.5 hours. This also means that Christian can attend school and interact with our family and loved ones. Something he so desperately needs.

The product wasn’t registered at the time and therefore traded under a different product name. It has since been registered in South Africa and the cost of the product is suddenly much more expensive, more than double the original price.

Discovery caps the amount which makes this option virtually impossible to utilise. What isn’t taken into account is the dose that increases as weight increases, and as a growing boy, this will happen. As the only difference of the new registered to the old version was the name, the increase in price was a massive shock to us. And what for more than a year was covered by Discovery inclusive of 4 vials and a months supply of consumables to the value of R15k will now cost approximately R24k – for a name change. This in essence means we have a co-payment of R9k per month in order to continue this treatment for Christian.

We asked his Dr to motivate for full cover and the process has taken weeks only to find we are absolutely nowhere. Discovery has complicated this appeal with changes to Nappi codes when Christian’s Dr has been motivating for his medical treatment at least every 6 months for the last 8 years. And now several letters and further appeals from his Dr to motivate for this, as required by Discovery.

Monday was my first day without any meds to give him. As the weeks progress, his immunoglobulin levels will start to drop. We can’t afford the co-payment to cover the balance of bill. I can’t understand why this is so hard.

What do I do as a mother? This is what he needs. This isn’t something he can do without. What do YOU suggest Discovery?