Thursday, December 09, 2010 » 04:56am

Drugs treating a very rare but deadly blood disorder are to be funded by the federal government, campaigners say.

Paroxysmal Nocturnal Haemoglobinuria (PNH) causes red blood cells to explode and is believed to currently affect about 70 Australians.

Soliris (eculizumab), the only treatment for PNH, is to be added to the government’s Life Saving Drugs Program (LSDP) after the Pharmaceutical Benefits Advisory Committee recommended (PBAC) funding, campaigners said on Thursday.

Linda Charlton, president of the PNH Support Association of Australia (PNHSAA), said the announcement would free sufferers from a looming death sentence.

‘It has been a turbulent, painful and heart-wrenching battle for our community, many of whose lives have been turned upside down,’ she said.

‘However, today’s decision to fully subsidise Soliris on the LSDP will give people living with PNH the opportunity to pursue fuller, happier and longer lives … we hope that the Health Department and Ministry can find a way to provide these people with access to this treatment earlier than January 1.’

Soliris is the only treatment for PNH proven to reduce the abnormal destruction of red blood cells (haemolysis).

The treatment acts to suppress the crippling and painful symptoms and complications associated with PNH, significantly reducing the risk of premature death.

Until now, the cost of the treatment stood at $480,000 per patient, per year.