On the afternoon of the 5th December 2016, the passing of Sotirios Katakouzinos, left behind an immense but unfortunately unknown legacy. A legacy that poses to us a great challenge as ordinary citizens, and in particular for those of us who are members of the TASC Society of Australia.
Having known Sotirios for quite a number of years, I am still overwhelmed and surprised every time, by the number of stories and encounters people had with him, and how he changed their lives, or helped them in times of great difficulty. From stranded families unknown to him in the dead of night seeking transportation to their very distant home, to youth who had taken the road towards self-destruction and drugs, there was not a person who Sotirios did not try to help. His positive “can-do” attitude, his measured words, his mindfulness of people and situations, were what made him both a discrete high achiever and philanthropist.
I am told by people in the town planning sector, that Sotirios was responsible for quite a number of laws, corrections and amendments to town planning rules that benefitted all Victorians, and helped remove bureaucratic tape and provide clear guidelines. Sotirios’ input in a number of projects, are manifest all across the state of Victoria, just as his mentoring of people within his profession.
Yet in a time and place where people are encouraged to avoid critical thinking, discussion or self-improvement, but to embrace mindless reality tv shows, his love of learning and breadth of knowledge was certainly refreshing. A quality that he put to use in convening public lectures and discussion groups covering topics ranging from history, philosophy, art, music, religion, culture, psychology and much more.
But without doubt, Sotirios’ greatest contribution and dedication, was to the cause of charitable organisations. I personally had lost count of the number of causes he tirelessly assisted. But without doubt, his greatest concern was assisting his fellow thalassaemia sufferers and all those affected by haemoglobinopathies. A concern that desired to get the best outcome for them, whether to have appropriate treatment facilities, clean blood and safe transfusion processes or trained medical staff. And that patients should have a voice to government and medical authorities and not be pushed around or neglected.
In his last dialogue with me prior to the lead-up to our 40th anniversary gala, and before his illness laid him low again, he made it clear as to the vision and direction that TASCS Australia needs to follow and the challenges it faces. He had highlighted to me, that for too long haemoglobinopathies had been ignored or overlooked by Australians and Australian authorities. That these conditions were perceived and often passed off as some obscure “ethnic based” chronic illness, irrelevant to Australians. Consequently he asserted, that more vocal charities and medical concerns took both the limelight and necessary support. To his mind, the 40th anniversary was an opportunity to remind people and raise awareness of the prevalence of haemoglobinopathies within Australia. Nor that Australia can ignore the issue of haemoglobinopathies, a point which was reflected in his landmark and for that matter last presidential speech.
Looking back, I think it only appropriate that I should recall as best I can for all readers of this article, the key elements of that last discussion, especially given the concerns that are often raised with the Society by those affected by haemoglobinopathies:
Sotirios Katakouzinos: “My family have been involved with the society from virtually its humble beginnings, assisting in fundraisers for vital medical equipment, lobbying government authorities to provide the appropriate treatment facilities, ensuring that the society had a social worker and community educator, and convening a number of events to ensure the quality of life for patients. Some of my fondest memories are those wonderful outings and barbecues we had.
Since the late 1980s, I have endeavoured to serve faithfully in many differing capacities as secretary, treasurer, committee member, volunteer, society member, president and much more, towards the cause of my fellow thalassaemics and improving our situation. The task has not been easy and fraught with many obstacles and challenges. Our limited human and financial resources often hampered the effectiveness of our service to the community, both to those affected and to the wider public.
The key difficulty lies in the fact that many patients are not involved, nor wish to get involved in their own support and advocacy network.
So the question is, who is better qualified to speak up about their condition than them?
Who knows better than them, what life is like suffering from haemoglobinopathies, and its related financial costs or the cost to their quality of life?
They cannot remain detached from their own support network. For this network is their only voice that ensures the longevity and quality of their lives. It ensures that their inalienable rights as human beings are not undermined nor ignored by government and medical authorities, or by the wider public.
The other key difficulties stems from two other points;
*(A.) The view that haemoglobinopathies are some sort of rare and obscure condition that only affects people of certain types of backgrounds. That is, it is an ethnically based condition which does not affect the wider Australia, which is not accurate. But we need to recognise that haemoglobinopathies are one of the most common genetic conditions around, as the World Health Organisations cites that 5% of the global population is affected or has carrier status, and that this percentage is very likely to rise. According to the medical experts, they believe this prevalence is due to haemoglobinopathies like thalassaemia, sickle cell anaemia and other related conditions developed as a biological defensive mechanism within humans, against the deadliness of malaria.
*(B.) The lack of reliable or current statistical data hampers our task of raising awareness or dealing with the sleeping giant of haemoglobinopathies. And if this sleeping giant is not dealt with now, will become a nightmare for many Australians, and place an immense stress and burden upon sufferers, their families, medical providers and government agencies. Australia is very ill prepared for what awaits it….At present, there are not ample numbers of qualified medical experts to deal with the existing situation, and having one treatment facility in an entire state is not sufficient to meet those needs either.
All the data we have, is out of date or anecdotal, but indicates that haemoglobinopathies are far more prevalent than we can ever guess, as each state deals with the matter differently and documents only known cases. We may know from anecdotal evidence that various Aboriginal communities are affected by alpha thalassaemia, and we may know that certain ethnic communities coming from malaria hotspots are likely to be carriers of haemoglobinopathies, but beyond that very little else. We do not know for example how the differing strains of thalassaemia mutate when two carriers from two differing ethno-geographic origins marry and have children for example, and in Australia’s multicultural society intermarriage between ethnic groups is very commonplace. And if we consider local population growth combined with the annual settlement of migrants and refugees in Australia, then we can see that haemoglobinopathies are with us to stay and will become more commonplace.
The challenges these difficulties present to us, is manifold:
To add to these challenges, most of the support networks and thalassaemia societies across Australia were very small scale and focused entirely on their local situation, and did not have the ability to raise sufficient funding, lobby state or commonwealth authorities, or have the human resources to educate the public effectively or maintain close networks with medical providers. The situation though has been made worse by the consequent dissolution of many of these support networks, as only TASCS Australia, the Thalassaemia Society of New South Wales and ASCAA in Western Australia are all that have remained to do the job at hand.
Nevertheless, we do have the internet which is a cost effective mode of communication and information which we can utilise. For example, we can make appeals to the public for assistance for events and fundraisers we convene, or we can educate the public through online videos and articles. We can also make it a standard practice to make regular visits to treatment facilities and speak with patients and medical providers, in order to hear their concerns and canvass ideas. We can organise play therapies for children, pizza days, free massages and so forth as steps to improving quality of life or the experience of being treated. This without doubt can help in breaking the disconnect, but patients will still need to make the effort to get involved in their advocacy and support network.
Efforts need to be stepped up both at the state and commonwealth levels, to develop a coordinated approach to dealing with all forms of haemoglobinopathies. And more to the point, lobby hard for more treatment facilities, funds, better medical staff training and better support to treatment units. The formation of a “friends of thalassaemia committee” in political circles is an urgent necessity towards this task, as law-makers and their decisions impact upon the treatment and well-being of patients. Yet public education programmes, especially securing a foothold into secondary school learning and curriculum is an essential. Of course the usual round of awareness days and medical conferences will always be important in this effort for raising awareness and education. But we can organise activities around these things also, such as go-kart days for thalassaemia and sickle celled children and so forth.
And given that we are one of the few support network remaining in Australia for people afflicted by haemoglobinopathies, then we need to ensure we have a presence in other states and territories, with people on the ground ensuring ongoing contact and relations with medical providers and hospitals, as well as local authorities and patients. The ideal situation would be to have a social worker, community educator, nurse and administrative officer in every state and territory representing our organisation, and travelling around their respective state serving the needs of those who are affected by thalassaemias and teaching the public.
In effect the sky is the limit, and we have many plans and ideas that we wish to and should put into effect, but the fundamental issue is we need people and resources to do this, especially patients.
It is no good sitting in a chair receiving a transfusion and feeling all depressed about life and your condition, because you cease to live your life and you get into a very negative mindset that brings you down and makes your health condition worse. And I say this, as one who has been treated for thalassaemia for many years….I would not have achieved what I did, if I had a negative mindset or did not get involved in the Society and have a say in its functioning, and helping my fellow sufferers. I can still remember the hepatitis outbreaks of the 1980s when people receiving blood transfusions were being infected, and in some quarters, the methodologies of administering transfusions were highly questionable and dangerous.
The fact that in the past, there were patients who got involved in establishing a support network and participating in it, ensured that we all had somewhere to turn to for help, strength and love. The Society was a place where we could grow against the adversity that thalassaemia presented. It made us stronger and resilient people who came to really enjoy and get the most out of life, and not mope about. I want my fellow sufferers to have what I had, the love, wisdom, experiences and care of fellow Society members and medical staff who got involved also.
In all honesty I do not know for how long I will live for, but I would like to leave behind a contribution that will help others, not vainglorious monuments to my personage. I do not care for such accolades, yet if my memory can attain something positive then so be it. For in this short amount of time I have lived upon this earth, I want to ensure that others receive the love and care that I received, and to which every person on this earth deserves and is a God-given right.
I have tired you with all these words, but I wish to impart to you what is my hope for the future of this Society, which will celebrate its 40 years of service to the community. And I believe that this important signpost, will be a positive turning point for the Society and its work, I hope and pray that I will live to see this materialise, please make it a reality….”