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PO Box 969 Penrith NSW 2751Mobile: 0409 945 114ABN: 99 117 585 976Email: [email protected]: www.idfa.org.auDGR1 & TCC
NSW CFN 18607 VIC CFN 9477QLD CFN 1544ACT Lic No L9000564TAS F1A-164SA CCP 3319
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Mr John CahillNational Blood AuthorityLocked Bag 8430Canberra ACT 2601Australia
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Dear Mr Cahill,
I have/someone I know has a Primary Immune Deficiency (Pi). Primary immune deficiencies are genetic with over 400 conditions. Pis significantly increase susceptibility to infection.
The World Health Organisation states that Immunoglobulin (human plasma) is the only lifesaving, lifelong treatment for Primary Immune Deficiencies. There is no alternative treatment for PI patients. Immunoglobulin is a biological and cannot be replaced by a generically derived product.
Without this treatment the patient will become extremely unwell, requiring regular hospitalisations, facing certain organ damage and reduced life expectancy. Quality of life will deteriorate.
I have been informed by IDFA that the Criteria for Immunoglobulin use has been changed. This has already affected some patients within the Immune Deficiencies Foundation membership who have been told they will no longer receive immunoglobulin treatment for their Primary Immune Deficiency. I/someone I know has been having immunoglobulin for years. I am concerned that the criteria will affect me/them one day.
I understand the value of human plasma and its cost. I believe that the cost of hospitalisations, medicines, organ transplants and other healthcare if a patient does not receive immunoglobulin will far outweigh the cost of supplying immunoglobulin as a treatment.
To quote from the budget: Program 1.1: National Blood Agreement Management“The National Blood Authority works to save and improve Australian lives through a world-class blood supply that is safe, secure, affordable and well-managed.”
Cutting PI patient immunoglobulin is not saving and improving Australian lives. This is cost vs care. Please tell me why the criteria continually reduces access to this critical treatment.
Yours sincerely,
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Supported by IDFA
IDFA – advocating, raising awareness and supporting people affected by primary and secondary immunodeficiencies 1
