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 included no allocation for Soliris™.  This decision has dashed the hopes of many patients awaiting treatment.

There are currently around 23 patients in Australia who are very ill and need this treatment, but do not have access to it.  There are some patients receiving Soliris™ at the manufacturer’s cost through a compassionate use scheme, however access to that scheme closed in July 2009.  Those patients receiving treatment are also concerned that the manufacturer will stop supply of the drug if they do not receive funding soon.

In April, two committee members, Linda Charlton and Grace Gallucci, met with the Finance Minister, Mr Lindsay Tanner, as constituents of his electorate and patient representatives to discuss the urgency of funding.  Mr Tanner was interested in hearing about how PNH is currently treated and the difference Eculizumab can make to patients’ lives and was very supportive of the PNH Support Association of Australia.

Last night’s decision was bitterly disappointing and has spurred us on to fight harder for access to Soliris™ for all Australian PNH patients who may need the treatment now and in the future.

Please help us

If you are suffering from PNH, whether receiving treatment or not, please get in touch with your local newspaper or radio station and share your story.

Also, contact your local MP to arrange a meeting with them or their senior advisor and ask them to write to the Health Minister, Ms Nicola Roxon, to request urgent funding of Eculizumab (Soliris™) through the Life Saving Drugs Program.

We urge you to share your PNH experience and let them know how important the choice of treatment is to all PNH patients.

Please do not hesitate to contact us if you require assistance or more information.