From CEO Fiona Wardman
HAE Australasia has met with the Pharmaceutical Benefits Advisory Committee (PBAC) to provide consumer comments on the funding of one of the new prophylaxis therapies. The presentation to the committee and comments were well received by the panel; however, unfortunately, the government at this time rejected the results of the submission. The panel have recognized that there is a need for this therapy and would like to make it available to as many patients as possible. More data is needed on things such as quality of life before the PBAC can reconsider the therapy.
HAE Australasia have also met with the National Blood Authority (NBA) to discuss the status of the submissions for other therapies.
We had the opportunity to present to Healthcare Professionals during the HAE Takeda Forum in Sydney on ‘What matters to patients’. The feedback from the HCPs was that the presentation was very well received.
HAE Australasia is working with Professor Connie Katelaris on gaining ethics approval for the HAEi Global Registry.
More patients have been added to the Australasian member database in the past few months.
The HAE Australasia Board held their Annual General Meeting; all board members have been re-elected. A date will be set for the next strategy meeting to work on plans, projects and events for 2020.
