funding treatments in Australia

Life Saving Drugs Program (LSDP)

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:

  • Imiglucerase (Cerezyme®), a drug for the treatment of Gaucher's disease; and
  • Agalsidase - alfa (Replagal®) and Agalsidase - beta (Fabrazyme®) for the treatment of Fabry's disease
  • Laronidase-rch (Aldurazyme®) for the treatment of Mucopolysaccharidosis type 1 (MPS1)
  • Elaprase® for the treatment of MPS II
  • Naglazyme® for the treatment of MPS VI
  • Alglucosidase alfa (Myozyme®) for the treatment of Infantile-onset Pompe Disease

    Criteria and conditions of elibility 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 (116kb)
    Application Form for subsidised Enzyme Replacement therapy for Fabry disease  (134kb)
    Criteria and conditions applying to financial assistance under the Life Saving Drugs Program

    27-Nov-2011

    Rare Gems Inaugural Newsletter

    Rare Gems Newsletter

    23-Nov-2011

    Fabry Shortage Update November 2011

    Genzyme update on the supply of Fabrazyme

    This section of the website contains published articles from the following sources:

    • Newspapers 
    • Magazines
    • Research Papers
    • Videos
    • Television

    There are some great you tube sites suitable for educating young Fabry patients.

    Watch the recent Fabry disease episode of House on FOX TV...

    Fabry Australia gratefully acknowledges the generous support of the following organisations that are helping to make a difference to people and families affected by Fabry disease.
     
       
                   
    Fabry Support Group Australia         ABN 70 053 079 595        Reg Charity A0029817E