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Help make medical treatment accessible for people with SEGAs

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Send your comments about Afinitor – a medicine for Tuberous Sclerosis tumours – to the Pharmaceutical Benefits Advisory Committee by 10 October 2012.

Afinitor approved for use, but expensive…

Early in 2012, Afinitor was approved by the Therapeutic Goods Administration (TGA) for: “the treatment of patients with subpendymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis (TS) who require therapeutic intervention but are not candidates for curative surgical resection.”

Unfortunately, the medicine can cost more than a thousand dollars per month for just one patient. Because the treatment is ongoing, Afinitor is very expensive for the patient or their hospital.

The ATSS is advocating for Afinitor to be listed on the PBS

Pharmaceutical Benefits Scheme listing would mean that the Australian Government would pay for most of the cost of the medicine, making the treatment much more accessible for those who need it.

At its forthcoming November meeting the Pharmaceutical Benefits Advisory Committee (PBAC) will consider listing Afinitor for PBS subsidy. As is routine, the medicine’s manufacturer (Novartis) has supplied the PBAC with the necessary detailed clinical and economic data.

The Australasian Tuberous Sclerosis Society (ATSS) is making a submission, and we think you should too. We’re concerned that unless the medicine is subsidised by the PBS, it is not going to be affordable for many families.

Your comments about SEGAs in TS are needed

This will be a first. The PBAC has never considered a medicine specifically for TS. What’s needed – to give the PBAC the complete picture – are the direct views of TS patients and their families.

So we’d like to make sure the PBAC hears why you want Afinitor listed by the PBS for the treatment of SEGAs in TS, and what life is like as a TS affected family. Your family doesn’t need to have experienced a SEGA to make a useful comment.

How to comment

Submissions close 10 October 2012 and must be made via the PBAC’s online consumer comments form. We have put together some information to help you with your submission.

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