In October’s Reach Out we mentioned that TSA is working with others to advocate for a medical benefits scheme (MBS) number for abdominal MRI for TSC screening, which is the internationally recommended screening test. If successful, this would make abdominal MRIs more widely available and free to access for people with TSC through bulk billing services. The application is now with the Medical Services Advisory Committee (MSAC).
Thank you to everyone who completed our survey. This will form an important part of TSA’s submission to MSAC. However, there is more you can do…
Everyone in our TSC Community is encouraged to please provide their support for this application by sending an email to [email protected] stating you are providing feedback for Application 1702 – Abdominal MRI for rare genetic conditions associated with increased risk of renal tumours. The closing date is 11 March.
Your feedback should talk about your/your family’s lived experience with TSC and abdominal screening, current barriers/issues, why you would like abdominal MRIs to be more widely/freely available and what difference it would make to you/your family.
The sorts of things you might want to talk about include:
- whether you’ve been offered abdominal MRIs and if so, what the cost was
- the fact that abdominal MRIs are recommended in the international guidelines for TSC and yet they are not widely and freely available
- having an MRI can reduce the anxiety that some symptoms might not be picked up if another type of screening is used – especially as we know that some tumours such as fat-poor AMLs may be missed by other forms of screening
- knowing that many people with TSC will develop AMLs during their lifetime and the risk of bleeding increases as the size of the AML increases. and so the best possible surveillance is critical
- making MRIs freely available will reduce inequality for those who cannot afford to pay for this service
- where brain MRIs are already being done for a patient under sedation, it would be so much better to be able to have an abdominal MRI at the same time
Please note, you should not include information or personal details in your feedback that you do not want shared with MSAC and its sub committees.
We would love to see MSAC flooded with feedback and it will really help strengthen our case. Thanks in advance for your help.
If you need any help or ideas about what to write, please email us at [email protected]