Don't Deny Me The Right to Life

I have hypogammaglobulinemia and I need to have one treatment of intravenous immunoglobulins (IVIG) once a month to stop me from getting fungus, viruses, bacteria, hospital superbugs and every other germ. Without this medication, I am constantly going from one infection to another, without many days between. And each infection further damages the organs until death is the result, or death results from one of the infections. In the last four months I have had septicaemia twice and bronchio-pneumonia once, and numerous ear and throat infections which has led to three long hospitalisations in isolation.

My medical Aid is Discovery Classic Comprehensive. Since 2015 Discovery has been paying for my IVIG treatments. The first IVIG was being produced by the Western Province Blood Transfusion Service (a charity) and was called Stabilized Human Serum. And in their infinite intelligence, the Medical Control Council closed their laboratory because it was not up to standard, but put nothing it it’s place, bearing in mind that the WPBTS is a charity, they did not have money to build a new laboratory.

The Medical Control Council registered two different IVIG; Polygam and Octagam. After a lot of red tape and medical review team efforts including registering a dispute, Discovery paid for Octagam for me for the next three years.

Octagam was being imported by Octapharma and ran out of stock in the country half way through 2018. We chased up every bottle from every hospital in the country and managed another two treatments. We then motivated for me to use Polygam, although I had had an allergic reaction to it once before during a hospital visit. They agreed and we started on Polygam for a few months – each time the allergic reaction got worse until my physician stopped the Polygam infusion because he said that the next time it would end up with me in ICU and intubated, if he could save my life. He said that continuing with Polygam would be a catastrophe.

Discovery has a Rare Disease Department and they suggested that I get the Octagam via a Section 21 company (we applied to Equity) to import it. This necessitated a lot of red tape, many forms and a payment to the Medical Control Council of R300 for approval. All the documents were then sent to Pre-authorisation and escalated to the Medical Review Teach and Touch Health for approval for payment.

I have received notice that Discovery will pay up to R15 000 per treatment and I am to use Southern Rx to obtain it. They are now telling me which company to import it from. I have also received notification from Southern Rx that my share of the payment will be R166 207.20 per month for my dosage.

I don’t know anyone who has that kind of money to pay for medication that is life-saving and life-enhancing ie. that is needed to stay alive.

Our Constitution specifies that we have the right to life, and Discovery and the Medical Control Council is denying me the right to life.