Ben Schrader

I‘d been getting breathless while exercising and generally feeling off colour. It was just the flu, I thought. I finally went to my GP in March 2012 and he took a blood test. A few hours later I was in Wellington Hospital. My red blood cell (haemoglobin) count was below safe levels and I was very sick.

Following tests, the doctors told me I had Chronic Lymphocytic Leukaemia (CLL). It was a huge shock. Was this a death sentence? Not necessarily, I was reassured. My type of CLL started with autoimmune haemolysis anaemia, where my spleen was destroying red blood cells faster than they could be replaced. This was treated by blood transfusions and a six-month chemotherapy course. After each round I spent days throwing up and feeling crap, but the treatment worked and I went into remission.

My CLL came back in 2015 and I had further treatment. It returned within 12 months. This time blood transfusions were unable to stop my haemolysis. I needed a splenectomy. I was in no state to have major surgery, but it was that or certain death. Happily, I came through. My haematologist suggested that my CLL might be treated with a new drug ibrutinib. The drug company was giving it to some patients with view that Pharmac would fund it once its efficacy was shown. I was accepted just before the window closed.

I’ve had no discernible side effects ibrtinib and without it my CLL would have returned. The drug has allowed me to keep working and be fully available to my family and friends. I feel great. It would be wonderful if other CLL patients could too. The cause of CLL is still unknown. Getting it appears to be a case of bad luck, but access to ibrutinib shouldn’t be left to chance.