Life Saving Drugs Program

Due to the rarity of the disease the cost of treatment is proportionately more expensive than other drugs on the Pharmaceutical Benefits Scheme (PBS).  Funding in Australia is provided by the Federal Government through the Life Saving Drugs Program (LSDP), which provides subsidised access, for eligible patients, to expensive and potentially life saving drugs for very rare life-threatening conditions. 

Before a drug is made available on the LSDP it must generally be accepted by the Pharmaceutical Benefits Advisory Committee as clinically necessary and effective, but not recommended for inclusion on the Pharmaceutical Benefits Scheme due to unacceptable cost-effectiveness. 

Financial assistance for such drugs is granted in accordance with specified eligibility criteria and subject to certain conditions.

The supply of life saving drugs under this special non-statutory arrangement commenced in May 1995 and evolved from the former Act of Grace payment arrangements administered by the Department of Finance under section 34A of the Audit Act 1901.

Currently, funds are specifically made available on an annual basis for the following therapies:

• Cerezyme® (imiglucerase) and Zavesca® (miglustat) for the treatment of Gaucher Disease
• Replagal® and Fabrazyme® (agalsidase alpha and beta) for the treatment of Fabry Disease
• Aldurazyme® (laronidase-rch) for the treatment of Mucopolysaccharidosis Type I
• Elaprase® (idursulfase) for the treatment of Mucopolysaccharidosis Type II
• Naglazyme® (galsulfase) for the treatment of Mucopolysaccharidosis Type VI
• Alglucosidase alfa (Myozyme®) for the treatment of Infantile-onset Pompe Disease

Criteria and conditions of eligibility for these lifesaving drugs and application and registration forms can be accessed as follows:

Guidelines for Eligibility to receive treatment with Algalsidase through the Life Saving Drugs Program

Application Form for subsidised Enzyme Replacement therapy for Fabry disease (262kb) 

Criteria and conditions applying to financial assistance under the Life Saving Drugs Program

LSDP REVIEW

In 2008, FSGA were asked to write a submission on behalf of Australian Fabry patients in relation to Enzyme Replacement Therapy (ERT), what is currently working for Fabry patients and what could be improved

To view this submission please read the following PDF by clicking here.

Australian Fabry patients who have any concerns about access to Enzyme Replacement Therapy (ERT) or concerns in relation to the decisions made regarding health care and ERT are encouraged to contact the LSDP directly and enquire about the appeal process.

Life Saving Drugs Program | Special Access Pharmaceuticals | Pharmaceutical Benefits Division
02 6289 8003  |  02 6289 3175  | lsdp@health.gov.au