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The international scientific community is calling for global action to help eradicate HTLV-1 – a lifelong infection affecting up to 10 million people worldwide.

A distant relative to HIV, the Human T-cell lymphotropic virus (HTLV-1) is a blood-borne, sexually and vertically transmitted virus that infects the immune system causing serious chronic inflammatory diseases, neurological diseases and blood cancers in up to 10% of infected people.

HTLV-1 is prevalent in Indigenous communities around the world. In some remote communities in Australia, 45 per cent of people have been diagnosed with this virus.

Yet, despite the effect of HTLV-1 on patients’ lives and the number of people affected, little significant progress has been made with drugs and vaccines for the prevention, treatment, and elimination of HTLV-1 since its discovery in 1980.

At the 20th International Conference on Human Retrovirology: HTLV and Related Viruses, researchers, clinicians and advocates from across the globe penned an open letter pushing for meaningful action from decision-makers in response to the ongoing HTLV-1 epidemics worldwide.

University of Melbourne Professor Damian Purcell, a Laboratory Head at the Peter Doherty Institute for Infection and Immunity (Doherty Institute), said there is an opportunity to prevent transmission, support patient health and work towards a cure from HTLV-1.

“HTVL-1 is not going away, and it causes serious diseases in a high number of people. We owe it to the communities affected to focus our effort on the development of solutions to prevent, treat, cure and eliminate the virus,” Professor Purcell said.

“Thanks to global investment and public health interventions, great advances have been made in the fight against viruses like HIV-1 or SARS CoV-2. We need the same approach to be applied to HTLV-1,” Professor Purcell added.

Haematologist and renowned retrovirologist, Professor Genoveffa Franchini from the United States’ National Cancer Institute and National Institutes of Health, said that the scientific knowledge that emerged from this conference provides the needed jump-start for the testing of therapies able to decrease HTLV-1 replication.

“Antiretroviral therapy, combined with available drugs able to decrease the severity of co-morbidities, will extend the life expectancy of HTLV-1 infected individuals,” Dr Franchini explained.

“The available vaccine platforms, that have successfully prevented infection or disease by other human pathogens, need to be urgently explored for their potential to prevent HTLV-1 infection.

“Complementing the available tools with the required resources will be essential to deliver future HTLV-1-free generations,” Professor Franchini added.

Professor Charles Bangham, Professor and Chair of Immunology in the Department of Infectious Diseases at the Imperial College in London, said “There is an urgent need for better treatments for both the inflammatory diseases caused by HTLV-1, especially the neurological condition known as HAM (HTLV-1 Associated Myelopathy), and the aggressive malignant disease Adult T-cell leukemia/lymphoma (ATL).

“We also need to increase awareness of the infection and these distressing and disabling conditions, both among the population at risk and among health-care workers,” Professor Bangham added.

Dr Fabiola Martin, Sexual Health, HIV and HTLV Specialist, Senior Research Fellow in the School of Public Health at the University of Queensland based in Brisbane, and elected President of the International Retrovirology Association (IRVA), said that the International Retrovirology Association needs to see proactive engagement with people affected with this virus.

“As patients all over the world keep reminding us: Nothing about us without us. We must inform people affected with HTLV-1 of i) their diagnosis immediately after testing, ii) the nature of its transmission & prevention strategies, iii) HTLV-1 diseases and the symptoms to look out for, and finally iv) link them immediately with care.

“Patients who are HTLV-1 positive have the right to be treated with the same urgency, dignity, transparency and respect as other people with chronic diseases in Australia,” Dr Martin added.

Dr Philippa Hetzel, Co-Chair of the ASHM HTLV-1 National Advisory Group, said that governments and policymakers need to commit to funding meaningful public health interventions.

“We cannot make progress towards the prevention, treatment and elimination of HTLV-1 without firm funding commitments from governments,” Dr Hetzel said.

“HTLV-1 has long been overlooked as a public health priority. We need to educate the public and healthcare providers about this under-recognised, under-diagnosed and under-reported virus. Alongside research into clinical treatments and preventative measures such as vaccines, we also need to invest in specialised clinics to support patients who are diagnosed with HTLV-1,” Dr Hetzel concluded.