On Tuesday 6th December, a representative of TASCS Australia had the distinct pleasure of visiting Maria Vamvakinou, who is the federal member for Calwell. The meeting was a follow up on a previously unsuccessful project some years ago, that sought to establish a bipartisan committee at commonwealth level, that would advocate for the needs and concerns of thalassaemia and sickle cell anaemia sufferers. But it was also a chance to touch base once again, after a previous meeting at the Society’s 40th anniversary gala.
As the Society’s representative sat down with Maria and one of her personal assistants, Maria began by enquiring about the chronic nature of haemoglobinopathies, current treatment processes, risks involved and whether there were any new developments in scientific research. The Society explained about the challenges that sufferers face with their ongoing therapy, their need to remain ever-vigilant about their general health with particular reference to their diet and the sort of activities they engage in.
Maria went on to enquire as to the work the Society does or needs to do, and what resources it might require in achieving its tasks. The representative pointed out that the task before the Society was not an easy one, as the Society has had to assume responsibility for other Australian states which no longer have support networks for thalassaemia and sickle cell anaemia. And that the task was hampered by the lack of current and reliable statistical data to deal with the concerns posed. The absence of a national strategy in dealing with haemoglobinopathies, was another point of grave concern which endangers the general health of all Australians. A matter made even more difficult, by the fact that each state adopts differing policies in dealing with haemoglobinopathies and even the manner in which they document statistical data.
The Society’s representative cited that the electorate of Calwell was a good example to demonstrate the challenge before TASCS Australia, as there are no specific facilities to treat Maria’s affected constituents. Furthermore, there is neither adequate support, training or resources allocated to existing hospitals and medical centres within the electorate, by either state and commonwealth authorities. And this is despite the fact that the demographic composition of Maria’s electorate of Calwell, has a number of various communities where haemoglobinopathies feature prominent.
The Society’s representative emphasised, that Calwell was but one amongst many metropolitan and regional electorates across Australia, which are poorly resourced to meet the growing needs and concern of haemoglobinopathies.
The representative then pointed out to Maria, that Victoria as an example of a state with a high prevalence of thalassaemia and sickle cell carriers and patients, has made provision for only one specific treatment facility to serve the whole state. And that other hospitals and medical centres that treat thalassaemia and sickle cell patients are neither adequately funded, nor provided with appropriate staff. And as for the patients, geographic and financial considerations such as affordable housing, prevent many from settling somewhere close to that one treatment facility. Yet the lack of reliable statistical data hampers the ability of the Victorian Department of Health and Human Services to plan and respond appropriately to the growing needs of haemoglobinopathies.
The Society’s representative, then highlighted that the misconceptions amongst numerous policy makers and departmental authorities, in believing that haemoglobinopathies are predominately the preserve of a few small ethnic minorities, was a grave mistake. That such false perceptions, are the chief hindrance to developing a state or national strategy to deal with haemoglobinopathies, or to raise public awareness and appropriate governmental support. The discussion began to examine the irony of this perception, as haemoglobinopathies are one of the most widespread chronic genetic conditions globally. And that the lack of awareness in Australia today, stems partly from the effective preventative measures and campaigns, that support networks like TASCS Australia and medical authorities had mounted in the past. Thus what would have been a serious problem today for the health and well-being of all Australians, had been contained somewhat, but the danger still remains though.
It was at this point Maria and the Society’s representative discussed re-attempting to establish the bipartisan “friends of thalassaemia” committee amongst federal politicians, so as to advocate for the needs of sufferers and raise awareness. It was then agreed to contact Russell Broadbent to participate in this undertaking, as his electorate of McMillan, is another thalassaemia/sickle cell anaemia hotspot, which is not provided with appropriate resources and services.
Maria cited that one of the next steps for TASCS Australia, is to put together a delegation of representatives, to go to Canberra and speak about haemoglobinopathies and the challenges they pose to Australia. The meeting then concluded, but the Society left Maria’s office knowing that the real work is now beginning, as the Society needs to get other federal members of parliament to get involved in this proposed committee. There is of course the need to organise a delegation to coordinate efforts in Canberra, but at least there is a good start to 2017. The Society only hopes that the endeavours of this project, will bear fruit for the benefit of all Australians affected by haemoglobinopathies. The Society therefore asks that it receives support from patients them and from the wider public.