Legacy and Challenges

From the time of its establishment, the TASC Australia in association with other Australian based Thalassaemia and Sickle Cell Societies, has been instrumental in preventing exponential increases in the number of cases of thalassaemia and sickle cell anaemia, due to its public education campaign.

 

This is a considerable achievement, as the Australian Red Cross Blood Service estimates that some 20% of Australia’s blood supply is consumed annually in the ongoing treatment of thalassaemia, sickle cell anaemia and other related genetic haemoglobinopathies.

 

Without doubt, if Australia had a greater number of cases of thalassaemia major and sickle cell anaemia, this would place greater pressure upon medical and blood services, and the percentage of blood consumption would be greater than 20% of Australia’s national blood supplies.

 

In any case, government authorities and medical providers have made some effort in dealing with thalassaemia and sickle cell anaemia since 1976. In various hospitals there now exist genetic counsellors and genetic therapists who are able to provide support and guidance to people affected by genetic haemoglobinopathies and to those closest to them. Diversionary therapists like “Play Therapists” also serve to alleviate the monotonously tiring process of regular blood transfusions and iron chelation therapy.

 

In addition, Medicare and various private health insurance policies have provided some (not complete) assistance in defraying the considerable costs involved with the burdensome lifelong treatment that thalassaemia and sickle cell sufferers endure.

 

However, there is still much more work that needs to be done in terms of advocacy, provision of services, public information and especially in terms of medical research into better and more affordable forms of treatment, with the hopeful possibility of finding a cure. And the challenges facing the TASC Australia are greater today as:

 

  • Public funding is becoming less certain and reliable.
  • The settlement of new migrant and refugee communities within Australia, which have a higher prevalence of thalassaemia and sickle cell anaemia, require immediate attention, counselling and education. (-Ideally within their own languages and cultural expressions).
  • Australians are becoming ignorant or complacent regarding Thalassaemia or Sickle Cell Anaemia and other genetic haemoglobinopathies.
  • The need to encourage more Australians to donate blood and support the work of the Australian Red Cross Blood Service is crucial.
  • The dissolution of various thalassaemia and sickle cell support networks throughout Australia, have created a vacuum in advocacy, public awareness, support and education needs, which had compelled the former Thalassaemia Society of Victoria to assume responsibility and become the TASC Australia.