Advocacy

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 and a pilot program has commenced in NSW. The government has announced that funding will be extended for an additional two years from August 2020. 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:

2.2.1.2. Ensure all existing screening and testing programs are sustainable and evolve in line with innovation over time and
2.2.2.2. Address urgent funding gaps associated with the effective implementation and sustained success of the Newborn Bloodspot Screening (NBS) National Policy Framework.

 

Get involved

Sign the SCID Newborn Screening petition for your State or Territory

NOTE: Residents of Queensland and ACT – e-petition and paper petition closed and tabled.

SCID Case Studies 

Case Study 2

  • Tom (age 3) 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.
  • Has been 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 now not working
  • Mother spent 6 months in psychiatric facility during 2019
  • Now additional issue to consider – COVID-19

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

Family burden

  • 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.