TASCS Australia meets with Kiwanis Moorabbin

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It was with much pleasure and honour, that on behalf of our Society, I was able to accept an invitation to one of Kiwanis Moorabbin club’s dual monthly meetings for the 21st November at the Cheltenham RSL.

For those who may not know much about Kiwanis I can provide a brief synopsis. Kiwanis, is an organisation that was originally founded in Detroit in 1915, as a network for like-minded businesses and professional people, who wanted to conduct their trade in an ethical manner and to promote ethical business practices. In addition to this principle, Kiwanis also sought to pool together the capital and resources of their network and put it towards the service of the wider public, by sponsoring social and charitable causes.

However in time, Kiwanis has departed from its commercial origins, and turned its main attention towards community service, with a particular focus on sponsoring programs that support youth.

TASCS Australia has worked in close conjunction with Kiwanis Moorabbin for a number of years, whereby Kiwanis has helped provide volunteers and raise funds for projects, like the production of our Society’s brochures and pamphlets in various languages to assist non-English speakers affected by haemoglobinopathies. Unfortunately over the last few years, TASCS Australia had lost contact with Kiwanis Moorabbin, and so we began the process of rebuilding that close working relationship.

My attendance to one of the Kiwanis club meeting and common meal, was the opportunity to discuss developments from both ends, and see how we can help each other. We had membership chairman Tim Vine speak at lengths about the Heart4Kids program which Kiwanis Moorabbin has been supporting for some years, while Geoff Hergt spoke about his experience of TASCS Australia’s 40th anniversary gala. This was followed with treasurer Bryan Williams and current President Ian Howison asking questions about the current work and issues confronting TASCS Australia, while Tim Vine asked questions about the nature and treatment of haemoglobinopathies and what medical developments had occurred to improve the situation.

We cited the various programs and efforts that the Society is drawing up to deal with the situation, but we highlighted the need for community backing in order to meet the issue at both the state and national level. Of particular concern was the fact that no government or medical authority or agency within Australia had any clear, reliable or current data regarding the prevalence of haemoglobinopathies within Australia. I cited that this lack of data, combined with the absence of a coordinated approach by authorities, causes immense problems in knowing how to deal with haemoglobinopathies generally. I noted that these chronic blood conditions will be of serious concern as new waves of immigration, intermarriage and the general growth of the Australian population will certainly see an increase in the prevalence of carriers and diagnosed (and I would add, undiagnosed) cases.

I highlighted that this situation is dire and will become worse since many of the support networks for thalassaemias and related conditions have disappeared, thus placing our Society to serve a national role. I pointed out that in the case of Victoria, having one treatment facility for the whole state was an ineffective approach for an entire state as other metropolitan areas, as well as regional areas are in great need for appropriate facilities. Yet the existing treatment centre is grossly under-resourced and under-staffed by non-permanent nursing personnel, that now requires patients to receive their pharmaceutical scripts from local GPs instead of qualified treatment unit staff.  And at present, there is discussion to merge the treatment facility with a large scale haematology unit, and the uncertainty surrounding this proposal.

I went on to explain that the situation in other states was not any better, as the respective medical and governmental authorities were not forthcoming with information or contact details even. Putting aside the numerous challenges that our Society was confronted with and discussed at lengths, I began discussing the new programmes and efforts being initiated such as the new website, the development of new educational materials, online videos, additional translations, the formation of political action groups and much more. Yet I pointed out the imperative need for having on the ground representatives in other states to provide education, counselling, events coordination and other services. To which we added the need for patients to take a more active part within their support/advocacy network, and the critical need for donations and funding.

The members of Kiwanis Moorabbin put forward various suggestions and strategies, and requested my attendance to future regional and local Kiwanis meetings, to speak about this “sleeping giant of haemoglobinopathies” and how we can tackle the problem. And as members noted, it is an immense problem which will become an ever-increasing burden upon those affected and to the wider Australian society and authorities.

In any case, the members thanked me for my attendance to their dinner, even though I felt that I was overwhelmed by the warmth and generosity of spirit of their distinguished club. I stubbornly insisted in thanking them for the opportunity to partake within their club meeting, and to speak and break bread with them. I felt truly humbled by the experience, but inspired by their ethos which reflects that Australian characteristic that in times of adversity, there is a desire to cooperate and find solutions to problems, and to promote the common good. So I reiterate, I was both honoured and humbled by the experience while strengthened by the can-do attitude that Kiwanis Moorabbin radiates. I only hope that more people take notice, and become members of this small but hard-working club that supports the community.

Vasilios Manavas

Community Liaison and Administrator

 

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