PO Box 969 Penrith NSW 2751Mobile: 0409 945 114ABN: 99 117 585 976Email: info@idfa.org.auWeb: www.idfa.org.auDGR1 & TCC

NSW CFN 18607 VIC CFN 9477QLD CFN 1544ACT Lic No L9000564TAS F1A-164SA CCP 3319

Date: 21-Apr-19

INSERT YOUR ADDRESS HERE

Dear INSERT MINISTER’S NAME HERE,

My name is INSERT YOUR NAME HERE. I have a Primary Immune Deficiency called INSERT THE NAME OF YOUR IMMUNE DEFICIENCY. I am a member of the Immune Deficiency Foundation of Australia (IDFA), the peak patient body who provide advocacy, education and support to people with both Primary (genetic) and Secondary (due to cancer, chemotherapy, organ transplant, other disease, other medications) Immune Deficiencies. The treatment I receive is LIST TREATMENT HERE. I have this 1,2,3 times a WEEK/MONTH in HOSPITAL/at HOME to lessen infections, reduce hospital admissions and improve my quality of life. This treatment is life-long.

Primary Immune Deficiencies (PIs) are a group of inherited diseases caused by defects in the genes that control the immune system, resulting in constant infections. These infections are usually severe, persistent, can involve unusual organisms and resistant to treatment.

Secondary immunodeficiencies (Sis) result from cancers, chemotherapy and immune disease and have the same major symptoms of constant infections which are difficult to clear

The World Health Organization has identified more than 450 primary immunodeficiencies, ranging from extremely rare (severe combined immunodeficiency affects one individual in 1 million) to the more common selective immunoglobulin A (IgA) deficiency, which occurs in approximately one in 500 individuals.

PID affects at least 10 million people worldwide 1 and 12,000 people in Australia In 2017, the incidence of Common Variable immune Deficiency (CVID - the most known of all Pis) in

Australia was initially estimated as 1 in 22,000. It is now estimated that approximately 1 in 10,000 Australians have CVID. 2

PID Can affect anyone, regardless of age, sex, ethnicity There is no cure for the majority of immune deficiencies. They can be devastating, debilitating and even

fatal.

It is World PI Week (22-29 April) and the focus this year is “Putting primary immunodeficiency patients at the centre of their care”. IDFA’s goals are to bring about change in policy and healthcare practice to improve quality of life of patients and their families through the following:

1. Diagnosis 1. by introducing newborn screening for SCID (the bubble boy disease, fatal to infants)2. by addressing the NBA Criteria for immunoglobulin Use

2. Access to treatments 1. by making access to immunoglobulin available, consistent and life-long to all immune deficient

patients who need it2. by addressing the NBA Criteria for immunoglobulin (Ig) Use and making access to Ig therapies

available for those who need it most3. by making access to SCIg (subcutaneous immunoglobulin treatment) easier and free to patients

(consistent with IVIg treatment)3. Access to care

1. by making Primary Immune Deficiencies recognisable and accessible to government agencies2.  e.g. NDIS

1 Source: US Department of Health and Human Services. National Institute of Health 2009 http://www.idfa.org.au/what-is-pid/ 2 Source: WEHI Institute https://www.wehi.edu.au/research-diseases/immune-disorders/primary-immunodeficiency

IDFA – advocating, raising awareness and supporting people affected by primary and secondary immunodeficiencies www.idfa.org.au 1

PO Box 969 Penrith NSW 2751Mobile: 0409 945 114ABN: 99 117 585 976Email: info@idfa.org.auWeb: www.idfa.org.auDGR1 & TCC

NSW CFN 18607 VIC CFN 9477QLD CFN 1544ACT Lic No L9000564TAS F1A-164SA CCP 3319

3.  e. g. Centrelink4. Looking at ways patients can be "linked" or "recognised" in the health system to enable faster

access to allied healthcare services

4.  Patient organisation resources: 1. Seeking government funding for IDFA to continue to provide support, education, resources and

advocacy to our members2.  Increasing grants, donations and fundraising to enable organisational growth to provide patient

services

Yours sincerely,

INSERT YOUR NAME HERE

The Immune Deficiencies Foundation Australia has a membership of over 1700 and supports over 900 patients with primary and secondary immune deficiencies with 1 FT and 2 PT staff and limited funding.

IDFA would appreciate the assistance of INSERT MINISTER’S NAME HERE in seeking government funding. Government funding would:

assist us to expand our resource capabilities assist more patients and healthcare professionals increase our advocacy campaigns increase our conferences for patients, carers and families increase our campaign to GPs Increase awareness of primary and secondary immune deficiencies’ Increase our ability to place our resources in hospitals, immunology centres and infusion wards Australia

wide

Any contact or meeting to discuss this would be welcome

Kind regards

Christine JefferyChief Executive OfficerImmune Deficiencies Foundation AustraliaM: 0409 945 114E: christine.jeffery@idfa.org.au W: www.idfa.org.au

IDFA – advocating, raising awareness and supporting people affected by primary and secondary immunodeficiencies www.idfa.org.au 2