Congress cautiously welcomes announcement on HTLV-1 funding

“The role of Aboriginal people is critical in shaping the response and it cannot be left to a taskforce of experts alone”

The Central Australian Aboriginal Congress cautiously welcomed the announcement of additional funding to address the issue of HTLV-1.

“This is a virus that has been in Central Australia for likely thousands of years and as yet its full significance is uncertain,” said Donna Ah Chee, Chief Executive Officer of Central Australian Aboriginal Congress.

“The role of Aboriginal people is critical in shaping the response and it cannot be left to a taskforce of experts alone.

“There must be respect for local knowledge, promoting culturally acceptable and appropriate health information and care.

“The role of Aboriginal community-controlled primary health services will be critical in working through the issue of HTLV-1.

Ms Ah Chee said that Congress is working with the Central Australia Academic Health Science Centre to convene a workshop of Aboriginal community controlled health services, Alice Springs Hospital, key research institutions and invited experts in early August.

“There has been much publicity on this in recent weeks and now it is time to take stock and carefully consider the issue and an appropriate response. We cannot have a top down, knee jerk reaction and we all need to work together to make sure this does not occur.

“One thing that is obvious is that this virus is nowhere near as harmful as HIV – if it was we would have known long ago.

“However, we do know that it can be spread sexually along with other important infections and it will be important to ensure that some of these new funds are used to reduce STIs in general including HTLV-1,” she continued.

“It has caused a small number of rare cancers. It is important to note that most incidents of cancer in Central Australia are caused by the commonly known risk factors – such as smoking, alcohol, poor diet and obesity – and this information has been a bit blurred in some of the publicity on HTLV-1 to date.

“We do not want people to feel unnecessarily scared,” she added.

“It is also uncertain how much of the virus is spread from mother to child.

 “Through the workshop we aim to achieve a consensus statement on the current state of knowledge, identify gaps in knowledge that require further research and consider whether there is a need to change current clinical guidelines for health practitioners in relation to HTLV-1.

“This workshop was planned prior to this announcement and the Commonwealth health department, through the Chief Medical Officer, will be part of this important meeting – which we hope will guide the way these new funds are utilised to address this issue.

“Following this we plan to be part of a meeting of Aboriginal leaders and organisations from across the tristate region in Central Australia to discuss the current state of knowledge on HTLV-1 and what needs to be done.

“As long as this new funding announcement can assist us to do what is needed then it is a very welcome announcement,” she concluded.

Media Contact: Kate Buckland 0408 741 691