Advocacy is one of the three key priorities for IDFA and we advocate on a range of issues that are important for patients with primary and secondary immunodeficiencies.
Our current advocacy initiatives include:
SCID (Severe Combined Immunodeficiency) Newborn Screening
Severe Combined Immunodeficiency (SCID) is a life-threatening genetic condition in which affected babies are unable to fight even simple infections. SCID is often referred to as the ‘bubble boy disease’ highlighting the threat of exposure to germs and is considered an immunological emergency. Without appropriate timely treatment, most children die before the age of 2 years. If diagnosed early and then treated early, SCID can be entirely curable. Early diagnosis is possible with universal SCID newborn screening.
SCID fulfils the internationally recognised criteria for a clinical condition to be screened at birth through this process. SCID newborn screening is already standard practice in many countries including the USA, Canada, Norway, Spain and New Zealand.SCID fulfils the internationally recognised criteria for a clinical condition to be screened at birth through this process. SCID newborn screening is already standard practice in many countries including the USA, Canada, Norway, Spain and New Zealand.
Federally the Standing Committee on Screening (ScOS) has endorsed SCID to proceed to a detailed review to be considered for inclusion in the Newborn Screening Program in all states and territories.
SCID screening costs less than $10 per child. Over half of Australia’s states and territories now have SCID Newborn Screening testing available for families. IDFA is calling for the implementation of routine SCID Newborn Screening in WA, SA and TAS. Funding should be made available for the routine inclusion of this lifesaving testing into newborn screening in all states and territories of Australia. The technology is available, and the clinical need is undeniable.
The Rare Disease Action Plan, adopted by the Federal government in February 2020, addresses issues associated with screening in two (2) action items from the Care and Support Pillar:
|220.127.116.11.||Ensure all existing screening and testing programs are sustainable and evolve in line with innovation over time and|
|18.104.22.168.||Address urgent funding gaps associated with the effective implementation and sustained success of the Newborn Bloodspot Screening (NBS) National Policy Framework.|
Help us advocate for SCID Newborn Screening in the remaining states.
We need your help in calling for the implementation of routine SCID Newborn Screening in Western Australia, South Australia and Tasmania. Write a letter to your state’s Health Minister using our templates below.
Step 1: Download the template for your state
Step 2: Fill in the blanks, print and sign
Step 3: Post it to your Health Minister (addresses are in the templates)
SCID Case Studies
Case Study 1
Case Study 2
Case Study 3
Case Study 4
Case Study 5
- Tom was finally diagnosed with SCID at 8 months old after constant infections from 3 months of age.
- Bone Marrow Transplant at 1 year of age.
- Was in hospital for 2 years (780 days+). Due to late diagnosis and not optimal transplant age, he has had infections, GVHost disease, developmental delay, many stays in Intensive Care Unit (ICU)
- Mother states that estimated cost at 18 months hospitalization was over $3.5 million
- Family transferred from Queensland to Victoria
- Both parents could not work
- Mother spent 6 months in psychiatric facility during 2019
- COVID-19 presented an additional issue to consider
Health System Costs
- The cost of SCID does not just impact the Care Unit(s) of the particular hospital
- It has impacted a psychiatric care unit and physicians
- It has impacted on costs of a hospital unit for 2 years for the parents
This family have:
- lost their income,
- had to move away from family (no family supports/no friends)
- experienced severe stress to the point the mother was in psychiatric care.
Sadly, Tom lost his battle with SCID passing away in November 2020.