Eczema Support Australia is rallying parents and healthcare providers as PBAC looks to extend the indication for a breakthrough medication.
Eczema Support Australia is putting out an SOS call for children with severe eczema.
The ‘Save our Skin’ distress call is part of a broader SOS for Kids with Eczema campaign to broaden the indication for dupilumab (Dupixent; Sanofi and Regeneron) to include younger children.
Dupilumab is a fully-human monoclonal antibody inhibitor of interleukin-4 and interleukin-13, which are largely responsible for the type 2 inflammation underlying atopic dermatitis. It has been listed on the PBS for patients with severe atopic dermatitis aged 12 years and older who have failed to respond to prescribed topical treatments since March 2021, a move that reduced the monthly cost of the drug from $1600 to $25.
The current issue is that one in three children under the age of six is affected by severe eczema – that and although dupilumab can be used in children as young as six months, the financial support isn’t there until children turn 12.
“Severe eczema robs kids of a normal childhood, affecting their health, emotional wellbeing, learning and socialisation through critical years of development and with life-long consequences,” said Melanie Funk, founder of Eczema Support Australia.
“We have hundreds of families contacting us in distress, unable to access the medicine their children need because it costs almost $20,000 a year.
“This makes no sense when we know that effective treatment in younger years can change the trajectory of a child’s life. It not only improves control of eczema over the long term, but also reduces their risk of related conditions, including asthma, allergies and hay fever.”
Dr Li-Chuen Wong, head of the dermatology department at the Children’s Hospital Westmead said that dupilumab saved valuable hospital resources in addition to relieving suffering in children with severe eczema.
“Several hospitals across Australia are providing children with compassionate access to the medicine, and the results have been incredible,” she said in a statement.
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“Data from the Queensland Children’s Hospital shows not only a significant improvement in symptoms in almost all the children receiving dupilumab, but also a 92 per cent drop in hospital admissions.
“This medicine is reducing unnecessary suffering and giving kids back their childhood, while saving our health system thousands of dollars. It’s a no-brainer that it should be funded through the PBS without further delay.”
But there is now a glimmer of hope for the children that have been left behind by the current PBS listing, according to the ESA.
“We can confirm that the PBAC will soon consider whether dupilumab should be funded through the PBS for Australian children aged six months to 11 years with severe eczema,” reads the ESA’s campaign website.
“As a health professional involved in the care of children with severe eczema, your voice can help decision-makers understand why timely access to effective treatment matters.”
Families and medical professionals who have lived with or treated severe eczema can share their experiences with PBAC until 20 May. The PBAC will meet in July before delivering a recommendation regarding funding to Federal Minister for Health, Disability and Ageing Mark Butler in August.
“Every day without effective treatment is a missed opportunity. We can’t afford further delays or excuses that leave young Australians without the medicine they need and deserve,” said Ms Funk.
“The cost of doing nothing is too high for our children, their families, our healthcare system and the economy more broadly. The time to act is now,” she said.
Further information about the SOS for Kids with Eczema campaign is available via the ESA website.
