On Wednesday 22nd February 2017, TASCS Australia’s Community Liaison, Mr Vasilios Manavas had the opportunity to visit the office of Julia Banks. Mrs Banks is the member for the Federal Seat of Chisholm, in which the headquarters of TASCS Australia is located within.
Upon visiting Mrs Banks, the Society’s representative on behalf of TASCS Australia, offered congratulations to Mrs Banks’ on her electoral win in 2016 and thanked her for her kind words offered for the Society’s 40th Anniversary, as well as her condolences on the passing of the Society’s late president, Mr Sotirios Katakouzinos. A small token gift was presented to Mrs Banks.
As discussion proceeded, Mrs Banks cited that she had prior links to TASCS Australia, when it was still known as the Thalassaemia Society of Victoria. As Mrs Banks noted, she had undertaken some studies about thalassaemia and had done some volunteer work for the Society in her youth. Mrs Banks also revealed that her connections with the Society did not stop there, as she is a relative of Dr John Mallios, who was one of the Society’s founding members, and prominent haematologists who had advocated the cause of thalassaemia patients, researchers and medical practitioners.
Amongst the points of dialogue, the key theme revolved around the current challenges that patients, medical practitioners, policy-makers and the general public faced regarding haemoglobinopathies. It was emphasised to Mrs Banks, that the combination of local population growth and immigration, was a major contributor to the increasing prevalence and distribution of haemoglobinopathies within Australia. That the lack of public awareness reinforced this trend, while circumstances are complicated by the emergence of new variations of haemoglobinopathies, due to intermarriage between carriers of differing origins and forms of thalassaemia.
It was highlighted that the crucial factor in failing to raise awareness or attend to the needs of patients, stemmed from the lack of volunteers, resources and funding, that is set aside for addressing chronic haemoglobin conditions such as thalassaemia. The root of this problematic situation as it was explained to Mrs Banks, was due to the absence of a clear policy or funding strategy by either Commonwealth or State authorities. A matter reinforced by the absence of communication, coordination and cooperation between such authorities.
Consequently, there has been no funding put into research, freedom of information between medical providers, awareness campaigns, or patient support. The result being that there is no current and reliable data by which to assess the extent of haemoglobinopathies, or the needs to address it. By extension, this limited the scope and hampers the ability of TASCS Australia and the Thalassaemia Society of NSW to serve the role of a support networks which can educate the public, assist policy-makers and address patient needs.
In discussing various recommendations and possible solutions, Mrs Banks suggested that one of the first key steps towards addressing concerns, was the necessity to establish a bipartisan committee of politicians and civil servants, who could advocate the cause of thalassaemia and sickle cell anaemia. It was agreed that such a committee was indispensable in influencing and encouraging the development of a strategy for haemoglobinopathies within Australia. The discussion examined what efforts were needed to achieve the formation of such a committee, and it was on that note, that the meeting concluded and the Society’s representative took leave of Mrs Banks and agreed to meet up again in future to follow this project up.