SCID Newborn Screening Petitions
- Download the petition and start collecting signatures today!
- DO NOT CHANGE anything on the petition. All petitions have been approved by their relevant State.
- The signatory MUST BE A RESIDENT IN THE STATE
- Petitions must include the physical address of the signee (no PO boxes)
- Get your friends, family, neighbours, school parents and work colleagues on board to help make this a reality. Your local shops or pharmacies may be happy to display the petition.
- Share this page link with friends and family
- Return all original paper petition pages by postage to: IDFA – SCID NBS Petition, 7 Jensen Place, HUGHES ACT 2605
- If you are a resident of the State and can’t take the petition to be signed by others, download the petition, you and your family can sign it, and then post it back to IDFA
- Residents of NSW NSW IDFA SCID petition_FINAL
- Residents of VIC VIC IDFA SCID petition_FINAL
- Residents of TAS TAS IDFA SCID petition_FINAL
- Residents of SA SA IDFA SCID petition_FINAL
- Residents of WA WA IDFA SCID petition_FINAL
- Residents of NT NT IDFA SCID petition_FINAL
- Residents of Queensland – E Petition and Paper petitions closed and tabled.
Residents of ACT – E Petition and Paper petitions closed and tabled.
Write to your local MP
You can support our campaign by raising the issue with your local MP. IDFA have prepared a template letter for you to download: SCID Letter for MP’s
Search for your local MP here: https://www.aph.gov.au/senators_and_members/members
SCID (Severe Combined Immune Deficiency) facts
- SCID affects 1:50,000 births in Australia.
- SCID is often referred to as the ‘bubble boy disease’ highlighting the threat of exposure to germs.
- SCID is considered an immunological emergency. Without appropriate timely treatment, most babies die before the age of 2 years.
- If diagnosed and treated early, SCID can be entirely curable.
- Diagnosis needs to be made before symptoms present
- Symptoms usually present from 2-3 months of age
- A HSCT (Haematopoeitic Stem Cell Transplant) must be performed ASAP after birth for optimal chance of life
- If performed before the baby gets sick, especially before the age of three and a half months, there is a greater than 90% survival
- Transplantation performed later, especially having presented with infection reduces the chance of survival to about 70%
- International cost effectiveness studies have also demonstrated that the cost of treating and transplanting children presenting symptomatic from SCID far outweighs the cost of transplanting asymptomatic babies, supporting the economic argument for screening. These costs include those related to prolonged hospitalisations and long term organ damage that may not be reversible.
- early diagnosis is essential to ensure the best health outcomes and quality of life for these babies
- SCID newborn screening is already standard practice in many countries including the USA, Canada, Norway, Spain and New Zealand
- SCID screening costs under $10
- This can save a baby’s life
- A SCID Newborn screening pilot program has commenced in NSW
- funding should be made available for the routine inclusion of this life-saving testing into newborn screening in all states and territories of Australia.
- The technology is available and the clinical need is undeniable.
- Read the IDFA_NBS_SCID_Position_Statement_Oct_2018_Final
- Read the European NBS White Paper by Professor Bobby Gaspar
Read SCID story Javeria
DONATE to this campaign. We are aiming to raise $1,000,000 to support the SCID research and pilot study currently being undertaken at the Children’s Hospital Westmead, and advocate for SCID newborn screening to be added to the Guthrie heel prick test given at birth to all babies. This will ensure early diagnosis and life saving treatment for SCID affected babies.
- Want to know more?
- More commonly known as the disease of the “Bubble Boy”, SCID is the result of a genetic condition which sees sufferers born with an undeveloped immune system. Babies with SCID are left defenceless against the broad spectrum of viruses, fungi and bacteria that would be virtually harmless to people with normal immunity. Many babies with SCID have no family history of the condition.
- EVERY child with SCID will die unless the condition is successfully treated; successful treatment depends on early detection. Given that babies with SCID appear healthy at birth due to a brief window of coverage from their mother’s antibodies (as well as the common delay in diagnosis) many children succumb to infection before treatment can be provided. Newborn screening provides an opportunity to detect SCID early in a baby’s life while the child still has protective antibodies and prior to irreversible, major exposure to infections.
As babies with SCID usually present with common pediatric conditions requiring diagnostic workup, Newborn Screening for SCID would ensure treatment is initiated earlier, minimising risk of exposure as well as limiting unnecessary and invasive testing.
- Medical developments mean it is possible to effectively treat SCID, which may provide the sufferer with the opportunity to lead a full life. A Bone Marrow Transplant (BMT) has the potential to provide positive long-term outcomes. If early diagnosis is achieved, BMT within the first 3.5 months of life results in a 95% survival rate! Positive outcomes however are dependent on early detection and successful uptake of treatment before babies are harmed and overcome by opportunistic infections. Hence, the imperative for Newborn Screening.
- SCID is a fatal primary immunodeficiency in which there is combined absence of T-lymphocyte and B-lymphocyte function. There are at least 13 different genetic defects that can cause SCID. These defects lead to extreme susceptibility to very serious infections.
- Severe Combined Immunodeficiency (SCID) is a paediatric emergency that meets all the criteria to be included in the national newborn screening programmes.
- Children born with SCID lack a working immune system. They are only partially protected from infection in the first few weeks of life thanks to maternal antibodies. Once these antibodies disappear from the child’s system, the child is prone to severe infections that threaten survival or seriously compromise the child’s health beyond the first year of life.
- Fortunately, effective treatments, such as stem cell transplantation and gene therapy can cure the disorder, however, the key is early detection. This can make possible life-saving intervention before infections occur. All types of Primary Immune deficiencies, not just SCID, would benefit from early diagnosis as research advances.
- Newborn screening for SCID will prevent infant deaths from undiagnosed SCID and also enable the potential diagnosis of other primary immune deficiencies.