The Hon. Greg Hunt MP
Minister for Health and Aged Care
MEDIA RELEASE
24 April 2022
Free treatment for Australian babies with rare disease
The Morrison Government is giving hope to parents of babies with the ultra-rare disease hypophosphatasia (HPP), who will soon have access to a new treatment, free of charge through the Life Saving Drugs Program (LSDP).
From 1 May 2022, Strensiq® (asfotase alfa) will be available to treat the most severe forms of the disease – perinatal and infantile onset of HPP. Without subsidy, the weekly cost of treatment may be up to $17,280 for a young child.
Characterised by debilitating symptoms including skeletal deformity, chronic pain and muscle weakness, HPP is caused by an enzyme deficiency and often leads to premature death.
There is a huge burden for these babies, their families and carers. Patients endure long periods in intensive care, oxygen supplies must be installed in the home and there can be difficulty in finding specialist care nearby.
Strensiq® works by replacing the missing enzyme – alkaline phosphatase – and improving bone health.
Minister for Health and Aged Care, Greg Hunt, said listing Strensiq® on the LSDP will help up to 10 children per year and will save families hundreds of thousands of dollars a year.
“This will be the first subsidised treatment for HPP in Australia and is not only life changing, but a life saving treatment for these babies and their families,” Minister Hunt said.
“Our Government currently funds 16 different life-saving medicines for 10 very rare diseases through the LSDP, providing physical, emotional and financial relief for Australian patients.
“These medicines are very expensive, and without subsidy it can place a financial burden on patients and their families.”
The LSDP provides free access to highly specialised medicines to treat patients with rare and life-threatening diseases.
Medicines funded through the program include high-cost medicines that do not meet the criteria to be funded on the Pharmaceutical Benefits Scheme.
The Morrison Government’s commitment to ensuring Australians can access affordable medicines, when they need them, remains rock solid.
This is a stark contrast to Mr Albanese and Labor, who when last in Government stopped listing essential medicines and treatments on the PBS and slashed funding for mental health support.
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