More than 20 countries say the world has been too slow to respond to the cancer-causing retrovirus – and urgent action is required

A coalition of the world’s foremost scientists, activists and researchers has written to the World Health Organisation to plead for action to combat the cancer-causing retrovirus HTLV-1, while the federal government is being urged to “show leadership” in dealing with the spread of the virus in central Australia.



In an extraordinary move, 60 representatives from 26 countries have signed the letter, telling WHO it is “time to eradicate HTLV-1” and conceding that “our global community has been slow to respond to the HTLV-1 predicament”.



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The letter, obtained by Guardian Australia and published on Friday by the medical journal the Lancet, points out that an “astounding” 17 prevention strategies have been adopted around the world to reduce the transmission of other blood-borne viruses such as HIV, but only four of a possible 12 are available for the millions of people who have HTLV-1.

HTLV-1 affects roughly 20 million people but a lack of awareness and testing mean there could be many more. Guardian Australia has revealed that in five Aboriginal communities around Alice Springs, an estimated 45% of adults tested have the virus, a rate thousands of times higher than for non-Indigenous Australians.



Dr Robert Gallo discovered HTLV-1 in 1980. He is the co-founder and director of the Global Virus Network and director of the Institute of Human Virology at the University of Maryland school of medicine. He wants WHO to develop and promote more up-to-date, evidence-based information on the virus.

“We want it to be aware, making recommendations on it, giving it much greater visibility,” Gallo told Guardian Australia. “Visibility leads to greater funding, and greater funding leads to more science, and that solves problems.

Quick guide What is HTLV-1? Show Hide What does HTLV-1 do? Human T-lymphotropic virus type 1 is spread through contaminated blood, unprotected sex and breastmilk. Like HIV, there is no cure. Like HIV, the virus causes potentially fatal complications but unlike HIV it takes much longer for symptoms to appear. Some people carry the virus for 30 years before chronic complications appear. Five to 10% develop a rapidly fatal form of leukaemia – nearly all of those will die within 12 months of diagnosis. Other life-threatening complications include kidney failure, lung disease, inflammation of the spinal cord leading to paralysis and other infections. The higher the viral load in the bloodstream, the more likely serious the symptoms. Who’s at risk? HTLV-1 infects up to 20 million people worldwide. It’s endemic to sub-Saharan Africa, South America, Papua New Guinea, Japan and central Australia, which has the highest transmission rate in the world. Essentially, once it has taken hold in an area, it is impossible to eradicate. Why isn’t there a vaccine? HTLV-1 was discovered in te 1980. It was eclipsed in scientific interest by the 1984 discovery of HIV, which caused a global epidemic. Possibly as a result, HTLV-1 has been neglected by the global research community. Testing, research and clinical treatment need to be conducted before any cure can be sought. Japan is most advanced in treatment. It has reduced the transmission rate over time by 80%, through mass testing, and is trialling drug treatments. In 2014, the Global Virus Network set up an HTLV-1 taskforce, led by experts from 11 countries, to help speed up the development of drug treatments and vaccination, and educate the general public.

“I was astounded to learn of the hyper-endemic numbers in the Aboriginal population of Australia. HTLV-1 is endemic in other regions including several islands of the Caribbean, and in countries such as Brazil, Iran, Japan and Peru.

“We hope that the WHO will agree with us, and begin to take action in promoting prevention strategies against HTLV-1.”



The letter outlines five key strategies WHO could adopt. Key among them is widespread testing. Despite the high prevalence of HTLV-1 in Aboriginal communities, Australia does not yet have a comprehensive testing regimen.

Improving access to testing is something Australia should be “working its backside off” to provide, according to the federal member for Lingiari in central Australia, Warren Snowdon.



Facebook Twitter Pinterest Dr Lloyd Einsiedel, who is a signatory to the WHO letter, with Una Ratara from the Baker Institute, which is spearheading the campaign to combat HTLV-1. Photograph: Anna Cadden/The Guardian

Snowdon is also Labor’s assistant minister for Indigenous health. He told Guardian Australia: “I’m quite shocked by the extent of it, or the potential extent of it. It’d be interesting to know what its coverage really is. But clearly it’s got grave implications for public health, in terms of treatment and access to treatment, access to blood tests at a reasonable price, getting blood tests analysed, getting information back.

“It might be focused in central Australia at the moment but I have no doubt that it crosses the WA and SA borders at least. It does require an approach across jurisdictions and it does require national leadership.

“That may be nothing more than convening meetings and inviting people with the capacity to set down a framework on how to deal with this, but there’s got to be a process whereby people are brought together.”

Most importantly, Snowdon said, the process must involve Aboriginal community-controlled health organisations, which specialise in delivering culturally appropriate primary care and public health messaging in first languages.

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Donna Ah Chee is the chief executive of Congress, the largest community-controlled health organisation in the country. Ah Chee told Guardian Australia “This could be absolutely devastating for our people, especially given the poor health outcomes experienced by our people generally. The role of Aboriginal people in managing this is critical.



“A major problem is that of shame around the transmission of the virus. As any mother in any culture in the world would know, the prospect of unknowingly causing harm to your child through this virus is beyond understanding. For this reason we cannot allow a hysterical response, let alone for it to become yet another item of negative, deficit reporting of our people.”

The 60 signatories to the WHO letter would seem to agree. “Words are important,” they write. “We need to change the way we talk about HTLV-1 to increase its visibility.”

The WHO vision for tackling HTLV-1 should declare that “our world will become a place where new HTLV infections are very rare and when they do occur, every person regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstances, will have unfettered access to high quality, life-extending care, free from stigma and discrimination”.