The PNH Support Association of Australia (PNHSAA) and the broader PNH community have been campaigning tirelessly for the past 18 months for Government-funded treatment of Soliris (eculizumab) through the LSDP.
According to Acting PNHSAA President and PNH patient, Ms Jenny Sturrock, Melbourne, Ms Roxon’s announcement is like the light at the end of a very long tunnel.
“It’s been a very long year-and-a-half for the PNH community. During this period we’ve been extremely concerned about the wellbeing of many of our members, their families and friends who are living day-to-day with this life-threatening disease,” Ms Sturrock said.
“Our understanding of achieving a second positive PBAC recommendation for Soliris means that the treatment has met even tougher, evidence-based criteria, effectively demonstrating that it substantially saves lives.”
Despite today’s PBAC recommendation, several steps remain before the Federal Government will make Soliris available through the LSDP. While the Government is acting with urgency to address these final steps, Australian lives will continue to hang in the balance until the process is complete.
“The PNH community would be most grateful if the Government would act with urgency in this situation, as it is literally a matter of life or death,” said Ms Sturrock.
“I trust that Ms Roxon understands the urgency of our plight and continues to treat the LSDP listing of PNH treatment with the utmost urgency.”
Soliris is the only effective treatment for the ultra-rare and life-threatening blood disease known as Paroxysmal Nocturnal Haemoglobinuria (PNH) – a condition which affects only 100 Australians. The treatment acts to suppress the crippling symptoms and complications associated with PNH, and significantly reduces the risk of premature death. Without treatment, the one-in-three people living with PNH will die within five years of diagnosis.
