From Director Fiona Wardman, HAE Australasia:
HAE Australasia recorded a Q&A video with Prof. Connie Katelaris in June. The questions and answers related to COVID-19, existing and new treatment options, clinical trials, and a new support service was announced for patients in Australia and New Zealand. The video has been uploaded on to our HAE Australasia YouTube channel.
The Pharmaceutical Benefits Advisory Committee (PBAC), the independent expert body to recommend medicines on the Pharmaceuticals Benefits Scheme (PBS), released its decision on the outcome of the latest submission to fund one of the new HAE treatments in Australia. The decision was to defer for further information. This deferral means that while the PBAC can see the treatment’s value and benefit, they require some extra information. A panel of stakeholders will be called upon to give their views, and we hope there will be a positive outcome for HAE patients in Australia. This same treatment has been registered recently in New Zealand. Our organization will be working on patients gaining access to New Zealand.
Plans are currently underway for the 2021 HAE Australasia Patient and Carers Conference in Sydney, Australia. We are looking at venues and will provide our members with more information as soon as plans are finalized.
HAE Australasia is presently working on a video project for our website. Our concept is to bring information, education, support, and awareness of HAE with various topics such as patient stories, mental health tools and tips, and general information on HAE.