Petition Closed
Petitioning Secretariat Australian Health Ministers Advisory Council

Introduce Newborn Screening for Congenital Adrenal Hyperplasia (CAH) in Australia


Australia is one of the only developed nations in the world that does not currently screen for the chronic health condition, Congenital Adrenal Hyperplasia (CAH).

Parts of the USA and New Zealand have been screening for CAH for more than 25 years. The Phillipines has recently introduced screening. Why does Australia not screen?

1 in 15,000 children are born with this condition each year in Australia.

Experts suggest the lack of screening in Australia costs the life of one child every few years, with several children almost losing their lives every year.

Here is just one heartbreaking story of so many that wouldn't have to happen if we had Newborn Screening for CAH in Australia.

" As a mother I knew something was wrong with Harry from birth. I saw two GPs, 5 different community health nurses and a lactation consultant who was also a midwife. I was trying all different methods of feeding him without success.

The final straw came when after the 4th night/day of constant crying, Harrison started vomiting bright yellow in the early hours of the morning. I took him to emergency and he was taken straight in and diagnosed with "failure to thrive". The blood test results revealed he had a critically low level of sodium.

We were then rushed to the NICU at the children’s hospital where we ended up staying for over a week to ensure Harry was stabilised and was then finally diagnosed with CAH.

I still can’t believe that if Harry was tested for CAH in routine screening (at minimal cost) we wouldn’t have had to go through everything that we have.

He could have died.”

 - Jo, mother of Harry, now aged 1

The photo on this page is Harry the day he was admitted. One more day and he would have been dead.

It's time to address this important child health issue. The CAH Support Group of Australia has been writing to politicians for many years about this issue without success. There's too much red tape. It is time for someone to be accountable.

The estimated cost of screening is about $2 per birth. That's LESS than a cup of coffee. The evidence is in. The screening tools are already in place. It just needs someone to make a decision.

The Australian Health Ministers Advisory Council needs to act now before more babies die from what can be prevented by newborn screening.

Find us on twitter @AUSCAHscreening

Letter to
Secretariat Australian Health Ministers Advisory Council
Introduce Newborn Screening for Congenital Adrenal Hyperplasia in Australia

Australia does not screen for CAH (Congenital Adrenal Hyperplasia) as part of the current Newborn Screening Register. Evidence suggests this omission costs the life of one child every few years, with several children almost losing their lives every year.

In Australia 1 in 50 adults carry the CAH gene. 1 in 15,000 children in Australia will be born with CAH. Australia currently screens for various conditions including Galactosemia which has an incidence rate of 1 in 60,000.

Australia is one of the only developed nations in the world that does not currently screen for CAH. The USA and New Zealand have been screening for CAH for more than 25 years.

Newborn babies are traumatically starting their lives in intensive care wards unnecessarily because CAH is not included in routine screenings.

The NSW/ACT Newborn Screening trial committee and the Human Genetics Society of Australasia have strongly recommended to the Australia Health Ministers Advisory Committee that CAH screening be included in the NSW/ACT Screening Register.

For reasons I do not understand, health ministers and health departments around the country appear to continually overlook the dangers of CAH and the benefits that would come from inexpensive CAH screening. It is only a matter of time before we lose another baby to this life threatening condition. New research from Western Australia implies that potentially 13 male babies have died in Western Australia in the past 21 years from undetected CAH.

Professor Garry Warne, recently retired from Melbourne's Royal Children Hospital called this a "scandal" in an interview regarding an open letter to the MJA (Medical Journal Australia).

As Dr Garry Warne pointed out ‘It is the state governments — guided by the Australian Health Ministers’ Advisory Council — who decide on funding for newborn screening tests, and who should be accountable for acting against the weight of expert opinion and systematic evidence.”
I urge the Australian Health Minister’s Advisory Council, to take the lead and address this important health issue.

Yours sincerely


Michelle Hoare
President, CAH Support Group of Australia