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

World HTLV Day 2023

​​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.
YOUR SUPPORT IS NEEDED
We need your support to raise awareness about the urgent need for HTLV-1 pre-exposure prophylaxis (PrEP) trials. 

After almost two decades of successful HIV PrEP clinical trials that have led to the FDA (government) approval of many antiretrovirals (treatment), the elimination of HIV is a reality that we all can look forward to. 

Many of these licenced drugs are also potent HTLV-1 inhibitors in vitro (in the laboratory setting).
Furthermore many of the aforementioned HIV PrEP clinical trials are conducted in HTLV-1 endemic areas.

Today we are presenting to you a new HTLV-1 Open Letter:

Why not eliminate HTLV-1 while eliminating HIV-1? We need HTLV-1 PEP/PrEP clinical trials.
(Please click HERE to read and sign the letter.)

This letter is addressed to the pharmaceutical companies Gilead and ViiV: asking them to add HTLV-1 incidence as an outcome measure to their HIV PrEP trials held in HTLV-1 endemic countries to see if the interventions used to prevent HIV would also reduce the HTLV-1 incidence.

So please accept our invitation and join us with your support and signature to spread the word widely.
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.”

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.

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.

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

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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
Home- What is HTLV? HTLV-1, HTLV-2, Diagnosis Asymptomatic Carrier HAM/TSP, ATLL Other Associated Diseases
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We felt that too many patients with HTLV and their relatives, too many clinicians and scientists did not know what HTLV was. We felt that everybody has the right to quick, accurate and easily accessible information online, but especially people who are suffering with HTLV and those who care for them.