HTLV-1: What it is and why you don't know about it

WORDS BY ANTOINETTE RADFORD

In a remote part of central Australia, there is a health epidemic that too many Australians know nothing about. Known as the HTLV-1 virus, the disease is likened to HIV, harbouring similarities in symptoms, contraction and effects. It’s described as a combination of both paralysis and leukaemia, is untreatable and its research is barely funded .  

What is HTLV-1?

HTLV-1 (Human T-lymphocytic virus 1)is a disease affecting over 5000 Indigenous Australians. 45% of Central-Australian Indigenous adults tested by the Baker institute, have tested positive to the disease. It causes chronic infection and is transmitted by sexual intercourse, blood to blood contact or passed on from a mother to a child. The disease attacks the immune system and can cause cancer. For those who fall ill with the disease, it has high rates of causing leukaemia and paralysis. So why don’t more people know about it?

Why don’t you know about it?

Here’s the problem: this disease has been known to Australian doctors, scientists and researchers since the 1980’s. When the disease was discovered by Robert Gallo (University of Maryland School of Medicine), he also co-discovered the HIV virus . The discovery of the HIV virus and its global prevalence resulted in an international response to the emergency. This directed the attention of many medical practitioners and researchers internationally into looking into preventative measures, and vaccinations against HIV. Leaving HTLV-1 in the dark, to become a neglected virus.  

What can we do about it?

Currently, the distribution of this disease around the world is highly focal, only affecting certain communities. These communities include the Central Australian Indigenous population, as well as many people from Western African nations, Papua New Guinea and Peru. Indigenous people in central Australia are the largest group internationally to face the retrovirus.

Yet, for those vulnerable to the disease, there is little access to testing, healthcare and no vaccine available to protect against the virus. The Baker institute is currently running a research program from Alice Springs hospital, which tests blood samples of those who may be affected by the virus, however these results can take up to six months to get back. These tests are also costly, and not subsidised by the government. The MBS  doesn’t cover blood testing to the disease, despite calls from Gallo to urgently start research, but it is possible to apply to the Federal Health Department for public funding. As of May 2018, there has not been an application lodged.

For many of the groups affected by this virus, there is little interest from drug and pharmaceutical companies to cater to such communities, as they do not offer the financial benefit that these companies seek. Recently, an outpour of international attention to this disease has resulted in many media companies addressing the virus, and encouraging spreading awareness of how many people in Australia are suffering from this disease.

For more information on how you can help, check out the Baker Institute.