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 2.5million Australians who suffer a rare disease, in particular for PNH patients, a cause very close to his heart.
Mr Abbott spoke briefly about the Life Saving Drugs Program being specifically designed to fund expensive drugs for a small category of people which made “an enormous difference” to those lives. He mentioned the Pharmaceutical Benefits Scheme and the Pharmaceutical Benefits Advisory Committee which considers drugs put up for subsidy.
I know the head of the PBAC very well, a thoroughly, thoroughly admirable person who wants to do the right thing by the patients of Australia but also understands that taxpayers’ dollars are not limitless. Now when the PBAC makes a recommendation that a drug should go on the Life Saving Drugs Program it is a pretty rough government that doesn’t accept it, so I think that drug should go on the Life Saving Drugs Program.
Rex then asked “And your government would?” Mr Abbott replied “Yep”.
Thank you Rex for attending and gaining a firm promise for treatment for all patients who need it. We are hopeful of a PBAC recommendation in the near future – we already know how effective this drug is, let’s hope the experts agree.
PNHSAA will continue to campaign whichever party gains power after August 21 to ensure that access to treatment is available as soon as possible.
12 August 2010