Support newborn screening for Severe Combined Immune Deficiency (SCID)

SCID Newborn Screening Petitions

  1. Download the petition and start collecting signatures today!
  2. Get your friends, family, colleagues and neighbours on board to help make this a reality. Your local shops or pharmacies may be happy to display the petition.
  3. Scan and email each completed petition page to [email protected]
  4. Most importantly: Return all original paper petition pages by postage to: IDFA – NB Petition, PO Box 969 Penrith NSW 2751

Residents of Queensland – sign e-petition here

Residents of QLD   QLD IDFA SCID petition_FINAL.docx

Residents of NSW  NSW IDFA SCID petition_FINAL

Residents of ACT    ACT 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

 

IDFA_NBS SCID Position Statement_Oct 2018_Final

 

 

 

 

 

 

Tom’s story – SCID

 

PLEASE SIGN YOUR STATE LETTER OF SUPPORT and SHARE THIS PAGE asking for the inclusion of SCID in Newborn Screening programs in Australia.

Please get on board so we can do better for our Australian babies and their families.

Read the European NBS White Paper by Professor Bobby Gaspar.

  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.

Donate by credit cardvia our secure Westpac site. Use  “SCID Donation” as the Reference.

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 defenseless 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.

David Vetter the 'bubble boy"

David Vetter the ‘bubble boy”

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. SCID Newborn screening is being done in other parts of the world, including New Zealand. In the USA, only 1 State is not screening for SCID or have not implemented a newborn screening pilot programme (see map). In Canada – Ontario and Nova Scotia. Other countries include Spain, Israel, Qatar, Sweden (Stockholm), Singapore (with payment) and Taiwan (with payment).

Pilot studies are being done in France, Germany, Norway, Iran, Italy, Japan, Norway, Saudi Arabia, Slovenia and Thailand (information from IPOPI).

NSW has launched a pilot study in 2018.

Babies and young children are still dying in Australia from SCID. If diagnosed and their bone marrow transplanted within the first 3 months of life, a child has a 95% chance at survival.

FOR MEDICAL PROFESSIONALS

Early recognition of primary immunodeficiency (PID) is vital as early referral to a specialist improves management of disease. A new e-training course for health professionals has been released by ASCIA that aims to increase awareness of PID amongst general practitioners, paediatricians and general physicians.

www.allergy.org.au/health-professionals/health-professionals-e-training

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