Yip, I was born and have lived in South Africa for 29 years. We closely follow the trends from UK, America, Canada and our doctors go overseas to conferences regularly to ensure the best possible treatment. Certainly what I have been told by the doctors all my life is similar to what I read on this forum. We use our meds daily, do regular home IV's and have to do physio. In South Africa there are a lot of caucasian people so CF is fairly common. I think it all depends whether this family will have private medical insurance or not. South Africa has got both 3rd world and 1st world aspects, it just depends where you fall in the spectrum and what you can afford.
Without medical aid:
In SA, if you do NOT have a private 'Medical Aid' like we call it, you have to visit the state hospitals where care is free if you have a low income. There are only one or 2 good ones, so its important that they go to one of these, e.g. The Johannesburg General Hospital have always had and still has probably the best CF clinic for children and a separate one for adults. Unfortunately not all the medicines are available at state hospitals, due to funding problems, but the 'basics' for surviving with CF are given. I can get my creon, inhalers, nebs, insulin, test strips, hypertonic saline, oral and IV antibiotics from the state hospital but they don't have pulmozyme or colistic for instance, and certain vitamins. If you want the other meds the dr will prescribe them but you will have to pay out of pocket at a private pharmacy.
With medical aid:
This is probably the best way to go although it is expensive to get a good medical aid that will cover CF. I was on 'Discovery'. (My med aid was almost R2000 per month and my salary at the time was around R7000 so that gives you an idea. Unqualified people sometimes only earn about R2000!). If you have private medical aid then you have it much better because then you can choose to attend a state hospital OR you can see any private doctor, of which there are a few around that deal with CF (you will have to hunt them down). I saw a paed pulmonologist at the Sandton Clinic for years and he was great, but now I don't belong to a medical aid anymore so I attend the JHB adult clinic and that is also fine for me. You can get your medicines approved on your medical aid under Chronic benefit and then you can just collect at a pharmacy every month. On a medical aid you will also have access to a lot more medicines like colistin and you can be admitted in a private hospital which is like a hotel compared to the state hospitals. State hospitals tend to be really overcrowded due to Aids etc, so this family should at least try and get on a hospital plan (a cheaper medical aid which only pays for hospital cover but at least you can go private if you get really sick). It is no fun to try and deal with a state hospital when you have an emergency.
The only thing I can think of that we don't get here is The Vest so we just do manual physio, active cycle of breathing, flutter, exercise.
Also lung transplants are not really done here yet.
Tell this family they are more than welcome to email me with any questions:
lenewandrey@gmail.com
