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Subscribe NowSOS for Kids with Eczema
If you have ever cared for a child with severe eczema, you know just how terrible it can be.
Feeling helpless as their skin cracks and bleeds. The sleepless nights. The missed school days. The mental and emotional anguish.
The confronting reality is that thousands of Australian children are being denied access to treatment that can halt severe eczema in its tracks.
It is not acceptable for these children to be left behind. This is why Eczema Support Australia is uniting families across Australia to issue an SOS for Kids with Eczema distress call.
Help send an SOS for Kids with EczemaIf you are a Health Care Professional, please view your dedicated page here:
For Health Professionals
SOS for Kids with Eczema – an important update!
It’s only been four weeks since we launched our SOS for Kids with Eczema campaign, and we already have good news to share!
We can confirm that a government body known as the Pharmaceutical Benefits Advisory Committee (PBAC) will soon consider adding dupilumab (brand name Dupixent®) to the Pharmaceutical Benefits Scheme (PBS) for the treatment of severe eczema in children as young as six months of age.
About dupilumab
Dupilumab is a medicine that targets the underlying inflammation responsible for the symptoms of severe eczema.
Dupilumab was added to the PBS for the treatment of severe eczema in people aged 12 years and older five years ago. The PBAC then recommended that the PBS listing be expanded to include children as young as six months of age.
Frustratingly, four years later, this has still not happened, and thousands of children and their families have been left waiting.
However, this may change soon. In July, the PBAC will consider a new application to add dupilumab to the PBS for children aged six months to 11 years.
Together, we can send an SOS distress call to end the wait and the inequities that Australian families have endured.
How You Can Help
If you are the parent or carer of a child with severe eczema, or if you or your child has received treatment with dupilumab for severe eczema, your story will make a difference.
There are several ways in which you can help send an SOS distress call – download our SOS for Kids with Eczema toolkit for families for a guide on how to get involved.
Action 1 – Share your experience with the PBAC (Most important action)
The PBAC is seeking input from the eczema community to better understand the importance of access to dupilumab for children with severe eczema. Eczema Support Australia has written to the PBAC. Now we need your help to put a name and personal story behind the urgent need for dupilumab, so the Government understands that this is about children’s lives – not just numbers.
Check out our toolkit for information on how to complete the online PBAC form. Please note that comments to the PBAC must be submitted by 20 May.
You do not need to write a long submission. Even a few sentences about your child’s experience with severe eczema can help the PBAC understand why access to effective treatment matters.
Action 2 – Contact your Federal Member of Parliament
You can also write to the Federal Member of Parliament who represents you and your local community. This is an important way to ensure the people who make decisions on the funding of medicines through the PBS understand what’s at stake.
Our toolkit provides a guide on how to identify and engage your Federal Member of Parliament.
Action 3 – Share your story with the media
Tell us how eczema has impacted your family and why it is so important that dupilumab is funded through the PBS for children like yours.
Action 4 – Share your SOS message on social media
Join us on Facebook and Instagram to like and share SOS for Kids with Eczema campaign messages with your friends and followers. Feel free to also share your family’s experience with severe eczema via your own social media channels to create maximum impact.
More information on the use of hashtags, tagging Eczema Support Australia and engaging key government decision makers is included in our toolkit.
If you would like more guidance on how to participate in the campaign, download our Advocacy Toolkit for Families.
The toolkit explains how to:
- Submit a PBAC comment
- Write to your Member of Parliament
- Share your story with the media
- Support the campaign on social media
Please share:
- How severe eczema has impacted your child and your family.
- What treatments your child has used or is currently receiving, and whether these have been effective.
- Your SOS message – what change you would like to see.
- Your child’s name and age, and where you live (suburb and state).
- The best phone number and email address to contact you.
- You may also upload photographs if you wish.
Once we receive your submission, our team will contact you to discuss how your story may be shared as part of the SOS for Kids with Eczema campaign.
Your story will never be shared publicly without your explicit written consent.
The more stories we have, the more effectively we can advocate for access to new treatments when we engage with government decision-makers and the media, as well as via our social media channels.
By submitting this form, you agree to the following:
- Accuracy of Information
You confirm that the information you provide is true and accurate to the best of your knowledge. - Parental/Guardian Authority
You confirm that you are the parent or legal guardian of the child described in this submission and have the authority to share this information. - Initial Submission Does Not Equal Publication
Submission of your story does not mean it will be automatically published or used. Eczema Support Australia will review all submissions and contact you to discuss potential use. - Further Consent Required
Your story, images, name, location, or any identifying information will not be shared publicly, provided to media, or used in advocacy materials without your explicit written consent following further discussion. - Editing and Use
If you agree to participate in the campaign, Eczema Support Australia may edit your story for clarity, length, and suitability for media, advocacy, digital, or print materials. You will have the opportunity to review and approve final wording before publication. - Image Permissions
If you upload photographs, you confirm that:
1. You have the right to share the images.
2. The images do not infringe the rights of any third party.
3. Any identifiable individuals in the image have consented to its use.
4. Images will not be published without your further written consent. - Privacy
Your personal information will be handled in accordance with Eczema Support Australia’s Privacy Policy. Contact details will not be shared with third parties without your permission. - No Medical Advice
Submission of your story does not constitute medical advice or create a clinical relationship. - Withdrawal
You may withdraw your submission at any time prior to publication by contacting contact@eczemasupport.org.au.
Acknowledgement:
Eczema Support Australia has received an unrestricted grant from Sanofi. The SOS for Kids with Eczema campaign is led independently by Eczema Support Australia.