HAVE YOU OR YOUR FAMILY BEEN IMPACTED BY PROTON THERAPY ACCESS IN AUSTRALIA?

I am urgently seeking to hear from Australian patients and families whose cancer treatment has been impacted by proton beam therapy (PBT), whether you were able to access it or whether you could not.

If you are able to, please send your story as soon as possible, ideally by Wednesday 19 August. I have important meetings with political leaders this week and would like to ensure the experiences of Australian patients and families are represented in those discussions.

Stories received after Wednesday are still incredibly valuable and will continue to inform our advocacy and future meetings.

This includes people who:

• travelled overseas for proton therapy
• accessed treatment through the Medical Treatment Overseas Program or another funding arrangement
• were told proton therapy would be beneficial but were unable to access it
• were considered for proton therapy but did not meet funding or eligibility criteria
• received another form of radiation or treatment in Australia because proton therapy was unavailable
• paid privately or fundraised to access treatment 
• are currently trying to access proton therapy.

We need to document the real human impact of Australia still not having a clinically operational proton therapy service.

Statistics matter, but the experiences of patients and families matter just as much.

If you are willing to share your story, please email:

📧 protoncanceraccessau@gmail.com

Please include as much of the following as you feel comfortable providing:

1. Patient's name
2. Age now and age at diagnosis
3. Diagnosis
4. Where you live – suburb/town and state is sufficient.
5. Was proton beam therapy offered or recommended?
6. If PBT was accessed: where you were treated, approximately when/year, and how treatment was funded?
7. If PBT was not accessed: what treatment was provided instead, where and when?
8. Your story: a brief summary of what happened at the time and how the patient/family is doing now
9. Permission to share your story privately with political leaders, MPs, health officials and other decision-makers – YES / NO
10. Permission to share your story publicly through social media and/or media outlets – YES / NO
11. Contact details for the patient, parent, carer or family member we can speak with.

If you are comfortable, I would also greatly appreciate one or more photographs, particularly a photo from around the time of treatment and a recent photo. Please let us know whether those photographs can be shared publicly.

You can absolutely provide your story for advocacy purposes without giving permission for it to be shared publicly. These are separate decisions, and your wishes will be respected.

For children, a parent or guardian is very welcome to provide the information on their behalf.

Please do not put personal medical or contact information in the comments. Send it privately to the email address above.

Every story helps us demonstrate that this issue is not theoretical. It is about Australian children, adults and families making extraordinarily difficult treatment decisions, often while also confronting distance, cost, eligibility barriers and the reality that the treatment they need may simply not be available here.

If this has affected you, your child or someone you care for, please get in touch.

And if it hasn't affected your family directly, please share this post so that it reaches someone it has.

📧 protoncanceraccessau@gmail.com - Ideally by Wednesday 19 August