Jayne Hewison, diagnosed with multiple myeloma
I am an 8 year survivor of Multiple Myeloma, an as-yet incurable cancer of the blood. I’ve had 2 stem cell transplants and don’t have much alternative to treatment with lenalidomide.
Towards the end of 2016, while being treated in Kwazulu Natal by a private specialist haemotologist, she put me on Revlimid. Discovery medical aid approved 3 months treatment. I received my first box of tablets on the exact day Revlimid was passed by the Medical Control Board of South Africa and my Doctor was attending it’s launch that evening.
Unfortunately I suffered 2 bouts of Multiple Pulmonary Emboli from Lenalidomide, however I have a blood clotting disorder and this is an angiogenic drug i.e. it works by constricting blood vessels thereby starving the cancer cells of oxygen. I was on ecotrin.
Shortly thereafter I moved to Johannesburg as I was informed there was nothing further to be done for me in KZN. Lenalidomide was the latest and only drug available to me. I’m currently treated by a specialist haemotologist in Pretoria who is the Director of ACT. He put me on Xeralto, the apparent “Rolls Royce” of blood thinners and applied for Lenalidomide for me as the trial I am on is no longer working adequately.
It was refused as we were told that my cancer is currently stable. If my numbers jump considerably I might get approval. The optimal numbers for serum free light chains for Multiple Myeloma is between 0 and 26. My numbers are 240. I am being left off all chemotherapy for 2 months, knowing that my cancer will spread. ONLY THEN MIGHT I QUALIFY.
I am emotionally distressed and seeing a psychologist as I know my cancer is worsening yet this is the only way to get approval for the last drug available to me, LENALIDOMIDE.
WHO holds my life in their hands?
And WHY must I bankrupt my family for the privilege of LIFE if I’m refused access?