As a community we want to promote proven effective transmission prevention strategies against one of the most potent human carcinogens, Human T cell Leukemia Virus subtype 1 (HTLV-1)

Visit our Spanish site run by our Argentinian Partners at www.HTLVconsciente.com

​​A Virus Does Not Discriminate Neither Should We

COVID-19 Update

HTLV-1 and COVID-19 update
For more information, please read the following pdf by clicking here.
We also recommend speaking to your doctor for any questions 

Insight into the impact of COVID-19
We would like to invite all those with HTLV  to participate in a short survey, to find out how it has affected them during this pandemic. If you are a person living with HTLV then please click on this link https://forms.gle/FM59WMprDz5Jk7ZL7 to submit your answers.  No information about your name or date of birth is taken and you cannot be personally identified.

Introduce screening for HLTV-1 in high risk expectant mothers: petition

In the absence of universal screening, many HTLV cases go undiagnosed and even associated diseases may not be correctly identified as resulting from HTLV infection. 

Mother-to-child transmission of HTLV is predominately through breast feeding and therefore preventable. No antenatal screening programme is in place. Avoidance of breastfeeding by positive mothers would prevent 80% of transmissions.

Support this position, by clicking here and signing the petition to give high risk expectant mothers the awareness and choice to be screened. It will save unborn babies the pain of developing cancer and the devastation this virus causes to countless lives.

World HTLV Day

WE CARE!
 
10th November is the World HTLV Day.
Join the international community in their fight against HTLV.
We wish to connect people affected by HTLV with each other and local experts.
We wish to raise the awareness of clinicians, policy makers and research funding bodies of the ill consequences this virus may have for patients infected with HTLV.
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Dr Fabiola Martin, Sexual Health, HIV and HTLV Physician, scientist and co-founder of www.htlvaware.com says: “HTLV-1 is a preventable, chronic infection with potentially devastating outcomes for infected babies, adults and their loved ones. We need to implement education, prevention, advocacy and research strategies to eradicate this virus together. This aligns 100 per cent with WHO’s Global Health Sector Strategy on STIs 2016-2021. It is time we take collaborative community-based action against this virus. The international HTLV community is looking forward to the outcomes of the WHO HTLV Consultation meeting held in Japan on 13,14 and 15 November. We thank Mrs Kristy Blakeborough-Wesson for representing people living with HTLV at this important meeting.”
 
Professor Damian Purcell, theme leader for viral infectious diseases at The Peter Doherty Institute for Infection and Immunity and Professor of Virology at The University of Melbourne said: “Persistent viruses of this type are not naturally cleared and will continue to spread if ignored.  However, in recent years many other blood-borne sexually transmitted viruses have been profoundly controlled through biomedical advances. Australia needs to commit to prioritizing research resources to addressing HTLV-1 infections as was done in combatting HIV, and the Hepatitis B and C viruses. As the Chair of the ASHM HTLV-1 Working Group, I’m confident that dedicated funding for a coordinated response from community leaders and Australia’s world-ranking medical researchers will fast-track the advances needed to prevent ongoing infections, disease and premature deaths from HTLV-1. We welcome WHO’s initiative in holding the first global consultation, which will complement the 20th HTLV Conference held every 2 years, with the next being in 2021 in Melbourne.”
 

Time to eradicate HTLV-1: an open letter to WHO, by Global Virus Network (GVN) Scientists & Activists

Recent developments & updates


April 2019
HTLV officially has as ICD-11 code, this means that doctors looking after patients can code HTLV systematically on their systems, making it easier to ask for resources. In addition,  the international surveillance of HAM/TSP can be conducted in a systematic and constructive way. 

April 2019
Find out more about the 19th International conference on Human Retrovirology here: https://htlvperu2019.com/

August 2018
Communique from the Human T-Lymphotropic Virus Type-1 Collaborative Forum – August 2018 (Click here for coverage by the Guardian) 
Collaborative Forum on HTLV-1 Alice Springs 2018: A Clinician’s, Scientist’s and Activist’s Representatives Perspective
Collaborative Forum on HTLV-1 Alice Springs 2018: A Patient Representatives perspective

​June 2018
Blood-borne virus expert Dr Fabiola Martin from UQ discusses HTLV-1 virus amongst Indigenous people in Australia & Intellectual Property lawyer, Stephanie Parkin, talks about the limitations in Australian laws to protect Indigenous art from exploitation. Listen here:   https://989fm.com.au/podcasts/lets-talk/lets-talk-45/
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We are each on our own journey. Each of us is on our very own adventure; encountering all kinds of challenges, and the choices we make on that adventure will shape us as we go; these choices will stretch us, test us and push us to our limit; and our adventure will make us stronger then we ever know we could be.
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Aamnah Akram