Prominent Central Coast musician Aaron “Northie” North told his fans for the first time last week about his PNH diagnosis via this YouTube video. Aaron was 18 when diagnosed with PNH two years ago and has continued to manage his demanding career with the dramatic impact of PNH upon his lifestyle.  Aaron has the benefit […]

Last night, Opposition Leader Tony Abbott gave PNH patients a firm commitment that his government, if elected, would fund Soliris, pending a PBAC recommendation to do so. Rex Lane, father of 17yo AA & PNH patient Whitney, attended the People’s Forum at Rooty Hill RSL and asked Mr Abbott what he would do about the […]

Prime Minister Julia Gillard responded to a letter from 29 year old PNH patient Jenny Sturrock, who pleaded for the PM to fund Soliris to save her life and the lives of the 70 or so other Australians with PNH needing effective treatment. Ms Gillard said she was “very very sympathetic” to Jenny’s circumstances and […]

Family First Party Leader Steve Fielding visited Jenny Sturrock today, a patient from Melbourne’s eastern suburbs, after reading her story featured in the Manningham Leader on 31 May 2010. Jenny was diagnosed with PNH in January 2010, shortly before her wedding and cannot contemplate having children without access to Soliris. Mr Fielding and Deakin candidate […]

Eculizumab (trade named, Soliris®) is the only treatment for PNH that effectively slows the rate of haemolysis and thereby significantly reduces the development of life-threatening complications such as blood clots (strokes, heart attacks) and kidney failure. Eculizumab is administered via an intravenous infusion once weekly for the first four weeks of treatment, and fortnightly thereafter. […]

The only effective treatment for PNH, Soliris ® (Eculizumab) is available in over 30 countries worldwide, yet despite the Pharmaceutical Benefits Advisory Committee recommending it for funding through the Life Saving Drugs Program in March 2009, the Government has still not provided access to the 86 Australians with PNH, some of whom are likely to […]

Minister for Health and Ageing 20 May 2010 SOLIRIS: MINISTER ASKS FOR FURTHER ADVICE ON NEW DRUG I have made an urgent request for further advice from the Pharmaceutical Benefits Advisory Committee (PBAC) on the potential benefits of adding Soliris® (eculizumab) to the Government’s Life Saving Drugs program (LSDP). The PBAC has recommended that Soliris […]

NEWSREADER: The Federal Government is under pressure to provide funding for Soliris, a treatment for an ultra-rare blood disease which is putting people’s lives at risk. It’s predicted one in three people living with the PNH condition will die within five years of being diagnosed if they don’t have access to the right treatment PNH […]

We are in the process of setting up an e-petition to lodge with the Australian Government, urging it to fast track the consideration of funding of the ONLY available treatment to PNH patients – Eculizumab (trade name Soliris®). Six Australians are gravely ill, currently suffering from the debilitating disease Paroxysmal Nocturnal Haemoglobinuria, many more are […]

Eculizumab (trade name Soliris™) is the only PNH-specific treatment available worldwide.  It was approved for administration in Australia in February 2009, however it is not yet funded.  The PNHSAA has been imploring the Government since its inception in June 2009 to approve funding of Soliris™ through the Life Saving Drugs Program.  However, last night’s Federal Budget […]