A government committee has recommended that the companies who manufacture two drugs be forced into a “pay for performance” model.
The ABC reports that the Pharmaceutical Benefits Advisory Committee has recommended that two drugs, one for cystic fibrosis and the other for a rare blood condition should be subsidised, but should also be placed under the model.
Under such a model, the PBAC will set the health measures that indicate effectiveness and patients who do not respond to the drugs will be taken off them.
One of the drugs in question is Kalydeco, which helps with a rare genetic form of cystic fibrosis. It is an expensive drug which costs $300,000 per year for each patient, but promises to help about 200 people.
Kalydeco is made by Vertex. According to the company’s International general manager Simon Bedson, the proposed changes would halve the number of Australians eligible for treatment. And those who are very ill would not be covered by the scheme.
The proposed “pay for performance” model has caused concern among some sufferers.
Melbourne mother Raechelle Haikalis, whose 12 year old daughter Ellie needs Kalydeco told News.com.au, “It’s my child I’m fighting for. We will be fighting further. We won’t tolerate these conditions.”
According to News.com.au, the $500,000 a year medicine Soliris used to treat the rare Atypical Haemolytic Uraemic Syndrome would also be covered by a similar model.
The government would force the manufacturer to agree that subsidies would be stopped in cases where patients don’t meet agreed clinical outcomes after using Soliris.