NEW CAH RESOURCE WEBSITE
The Sydney Children's Hospital at Randwick has recently launched a new website, that provides resources focused at parents of children with CAH, at www.cahpeptalk.com/. Some parts of the site require password access, for intellectual property and copyright purposes. We're hoping to be able to provide access to these areas, for paid members of CAHSGA, in the not too distant future.
NEWBORN SCREENING
Unfortunately, Newborn Screening (NBS) for CAH is still not routinely tested for Australia wide. Victoria, Western Australia, Northern Territory, South Australia and Tasmania are yet to implement the Newborn Screening (NBS) test that is designed to diagnose CAH, at birth, to allow our babies to immediately receive the necessary care and medication required to ensure their survival. We are one of the only developed countries who do not test for CAH nationally.
The mortality rate for boys with CAH is higher than that of girls. If we had NBS this would not be the case.
Many newly diagnosed baby boys with CAH spend many weeks in Intensive Care Units after becoming critically unwell due to adrenal crisis. If we had NBS this would not be happening to our families. With early treatment, children with CAH enjoy a wonderful quality of life.
A delay in diagnosis can be fatal for children with more severe forms of CAH, but even for those with less severe CAH the impact of late diagnosis carries a unique burden. Growth and pubertal development are affected, and children must then consult specialists and take expensive, unpleasant drugs for many years to ensure their development progresses as steadily as possible.
CAHSGA is working with medical professionals and advocacy groups to ensure NBS is included in Australia nationally.
Previous CAHSGA President Michelle Hoare, had the opportunity to discuss NBS with the Hon. Katy Gallagher, Chief Minister and Health Minister of the ACT. Ms Gallagher also sits on the Australian Health Ministers' Advisory Council (AHMAC), the organisation that governs NBS in Australia. Michelle presented the Chief Minister with this letter:
with the following supporting documents:
Letter to MJA - Garry Warne et al
European Journal of Endocrinology - CAH NBS article
Links to social media and media campaigns
Our online petition for CAH NBS through change.org
Experts push for addition to NBS test
Is it time to commence CAH NBS?
