Mapping HTLV in India to improve patient outcomes

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HTLV is a human retrovirus, different from HIV, infecting approximately 10 million people worldwide. Similar to HIV, it is transmitted between people by sexual contact, from mother-to-child and through the sharing of blood products. It can cause a debilitating myelopathy (HTLV-Associated Myelopathy also called Tropical Spastic Paraparesis) and an aggressive blood cancer (Adult T-cell Lymphoma/Leukemia), usually only years after infection occurred. However, because HTLV is most often asymptomatic, physicians around the world don’t give it due attention except in regions where it is endemic: Japan, parts of Africa, parts of Latin America, the West indies, the Middle East, and now Australia.

The problem is that we don’t know the status of HTLV in many nations. We don’t know if individuals who are showing symptoms of HTLV-associated diseases are being diagnosed correctly, effectively, and provided medical care appropriately. In addition, this lack of knowledge could potentially affect the safety of blood bank products.

In India, the scale of the HTLV problem is not known because a nationwide surveillance has never been conducted. Case reports suggest identification of HTLV infection are based on the late onset of symptom manifestations, at a point when treatment of the diseases becomes palliative. This lack of consideration for HTLV was more abundantly seen in South India, where a good portion of the case reports came from. For the sake of treating infected individuals appropriately, it’s important to determine how frequent HTLV infection is in the nation and in blood banks.

This image shows a child with Infectious Dermatitis, an early age manifestation of HTLV.

The Goal

The aim of the proposed work is to conduct the first nationwide surveillance for HTLV in India. During Phase 1 we will test 200 samples. We plan to collaborate with the National AIDS Research Institute in India to randomly test 10,000 samples from blood banks in 5 geographically distributed regions when we have sufficient funding. This will determine whether the HTLV status in India is serious enough to warrant further investigation. Addressing the project through blood banks will protect the identity of all blood donors.

The Importance

The project ideally will help raise awareness of HTLV in India. Regardless of HTLV status in the country, patients who are presenting with viral manifestations should be treated appropriately and not be harmed due to delayed diagnosis. The hope and goal would be to introduce the importance of the virus so that physicians will consider HTLV on their list of differentials for the treatment and care of patients presenting with leukemias and myelopathies.

The Outcomes

We hypothesis that HTLV is present in India. We hope that the results from this surveillance study will support our hypothesis. The project should also raise awareness of HTLV in India such that physicians will be more likely to include HTLV and HTLV-associated diseases in their list of differential diagnoses.

The expected outcome, based solely on limited published work from India, is a prevalence between 0-4%. India’s population is 1.3 billion currently, 4% of which is approximately 53 million individuals.

The Budget

Phase 1: Thank you everyone for your contribution! We are excited to informed you that we have raised enough money to test 200 samples in one geographic region of India! This means that the project will be happening, albeit on a smaller scale. Contributions are further welcomed.

Phase 2: We would like to do a larger project which was our original aim. The cost to purchase the detection kits for testing 10,000 blood samples is 79.5k Euros. There is an additional cost of 12k EUR for transport, lab consumables and fundraising costs. Our partners are sponsoring 37.5k Euros. We’re aiming to crowdfund £20k in the future and look for additional sponsors for the remaining funding requirements. The funds will be managed by the Department of Clinical and Evolutionary Virology, Rega Institute of Medical Research, KU Leuven.

The Team

I am a final year medical student in the United States who also trains in HTLV research at KU Leuven in Belgium. I have a few first author publications to my credit as well as abstract presentations on the international platform. I have conducted HTLV research in the Caribbean, where I collected patient blood samples from two general hospitals for my research.

My research advisor is Dr. Johan Van Weyenbergh at KU Leuven and the lab’s PI is Prof. Dr. Anne-Mieke Vandamme. The lab focuses on clinical and epidemiological virology, thus training and supporting me well for conducting this project. If you have ever heard of the Rega HIV drug resistance algorithm, it was created in this lab and the director of the other famous HIV drug resistance algorithm, StanfordDB, is a former PhD student of that lab. In addition, this project was submitted by me as a challenge to the Institute for the Future at KU Leuven, and the requested funding would support this challenge.

Dr. R.R. Gangakhedkar is the director of the National AIDS Research Institute and has trained numerous students at the Institution. He is now also leading the Indian Council of Medical Research. His expertise in HIV and other viral infections in India is beyond my ability to succinctly explain here. His support for this project validates the importance of determining HTLV status in India.

This tea plantation is located in Kerala (South India), where the majority of the case reports came from.

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Mapping HTLV in India to improve patient outcomes

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