Make testing of HTLV-1 available on the Medicare Benefits Scheme and fund HTLV-1 research

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HTLV-1, Human T-lymphotropic virus type 1, is a disease transmitted through sexual contact, blood, and breastfeeding. It can cause a rapidly fatal form of leukaemia, inflammation of the spinal cord leading to paralysis, severe lung disease known as bronchiectasis and other inflammatory disease. It was discovered at the same time and by the same scientist as HIV, yet has received nowhere near as much research funding.

This often-fatal disease has no known cure, and is reaching epidemic proportions in some indigenous communities, with many communities in central Australia having infection rates approaching 50%. A particular challenge is that testing is presently only performed by one laboratory in Australia, and testing costs are not covered by the Medicare Benefits Scheme. Consequently, tests are expensive - presently $169 per test - and perhaps more significantly, it takes up to 6 months to receive results. Making HTLV-1 testing available on the Medicare Benefits Scheme, even if it were limited to populations at particular risk, may allow more laboratories to make the testing available and significantly reduce waiting time for results.

Clearly, accompanying this, a lot more research needs to be done, both on how best to manage HTLV-1 positive patients post-diagnosis, in a culturally-sensitive manner, and in search of a vaccination and cure.

Please make both of these things happen as a matter of urgency; our central Australian brothers and sisters are being devastated by the ravages of this awful virus, and they desperately need the assistance that other Australians would rightly expect if faced with such an awful disease.

Guardian article 24 Apr 2018

Wikipedia article on HTLV-1



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