My name is May Ali and my life is at risk. Please ask Health Minister Sussan Ley to intervene for continuation of life-saving drug Eculizumab. Without it, I could die. Please act now to help save my life.

Up until July last year, I was a healthy and active member of the community. A mother of two wonderful daughters, a wife to an amazing husband, and an emerging artist, my future was bright.

But then things went downhill. Shortly after being diagnosed with the autoimmune conditions of Sjogren’s syndrome and myositis, I was admitted to hospital for what was expected to be a short stay of a few days.

Unfortunately my condition deteriorated rapidly, puzzling my specialists as my symptoms intensified and began affecting multiple organs. Coming close to death several times, I also became severely disabled, unable to sit, walk and feed myself. I required full-time care and medical attention.

Eventually, I was diagnosed with atypical haemolytic uremic syndrome (aHUS) in addition to my other autoimmune conditions. This combination has not been recorded in medical literature, making me a very unique case that does not fit a “one size fits all” approach.

I was given the lifesaving drug Eculizumab, as my last hope. This drug literally saved my life, allowing me to be reunited with my family and friends after a harrowing five months in hospital. It has given me the opportunity to work at rehabilitation, regaining my independence and quality of life, albeit to a different level from my previous healthy self.

I still suffer from chronic kidney disease and other issues due to organ damage sustained prior to Eculizumab but Eculizumab has successfully halted any further damage and allowed my body the opportunity to recover as much as possible.

Unfortunately, Eculizumab is a prohibitively expensive drug without government subsidy – it costs around $500,000 a year. For the last 12 months it’s been subsidised on the PBS. However, late on Thursday 3rd December, I was advised that my doctors’ application to continue my treatment was rejected. Four specialists who are responsible for my treatment strongly believe that my life depends on this drug. My next dose is due on Thursday 10th December.

It is the opinion of my doctors that without Eculizumab, I am likely to sustain further damage to my kidneys and other organs, again stripping me of my independence and quality of life, and placing my life at risk. This risk is too high to take.

Please help to keep me alive by asking Health Minister Sussan Ley to intervene to allow me access to PBS subsidised Eculizumab. It is the opinion of my doctors that without it, I could die. 

Thanks for your support. 

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May