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The United Kingdom
In the United Kingdom (excluding Scotland), it is estimated that 20,000 – 30,000 persons are infected with Human T-cell Leukemia Virus (HTLV) (Tosswill et al BMJ 1999;320:611-2). This is predominately HTLV-1 infection although a small minority of infections are with HTLV-2. 

In the absence of universal screening, many HTLV cases go undiagnosed and even associated disease may not be correctly identified as resulting from HTLV infection. As of May 2012, 920 people have been diagnosed with HTLV in the UK since 2002. The HTLV service saw 243 patients in 2011.  Diagnosis is identified through Public Health England (Formerly the Health protection Agency) (HPA)) enhanced surveillance programme. Surveillance data is cumulative to date and is not sufficiently developed to account for patients who have died or moved. Annually, c.90 people diagnosed with either virus.

Many patients are of African-Caribbean origin although 28% of recently diagnosed infections were in people born in the UK, not restricted to those of African / Caribbean origin and 45% of infections were acquired in the UK. Although thought of as a condition of older age, presentations are represented through the age ranges. 

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. Evidence for other interventions (e.g. elective C-section) are not evidenced based and tends to be extrapolated from evidence in relation to HIV infection.   

2013/14 NHS STANDARD CONTRACT HUMAN T-CELL LYMPHOTROPIC VIRUS TYPE 1 AND 2 

UK HTLV Centres
Services for HTLV-1 are provided by three hospitals in England. The lead service is provided at St Mary’s Hospital (Imperial College Healthcare NHS Trust), and satellite clinics are run at Queen Elizabeth Hospital (University Hospitals Birmingham NHS Foundation Trust), North Manchester General Hospital (The Pennine Acute Hospitals NHS Trust) and at a community clinic in York (York Teaching Hospital NHS Foundation Trust). The service is commissioned via Imperial College Healthcare NHS Trust who subcontract with Birmingham, Manchester and York.

The National Centre for Human Retrovirology, London
Imperial College Healthcare NHS Trust 
The clinical lead is Dr Graham Taylor
Find out more by clicking here, or email [email protected]

University Hospitals Birmingham NHS Trust
Queen Elizabeth Hospital Birmingham
Department of Sexual Health
The clinical lead is Dr Meg Boothby

Pennine Acute Hospitals NHS Trust
Department of Infectious Diseases
North Manchester General Hospital
The clinical lead is Dr Alec Bonington

York Teaching Hospital NHS Foundation Trust
Monkgate Health Centre
The clinical lead is Dr Fabiola Martin
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.
  • Home
  • Global strategy
  • Australia Forum Update
  • Meet our reps
  • Meet the experts
  • What is HTLV?
  • HTLV-1
  • HTLV-2
  • Diagnosis
  • HTLV diseases
    • Asymptomatics
    • HAM/TSP
    • ATLL
    • Other Diseases
  • Treatment
    • Asymptomatics
    • HAM/TSP
    • ATLL
    • Science >
      • History & More info
      • Ongoing trials
  • Global
    • United Kingdom
    • United States
    • Brazil
    • Argentina
  • Contact Us
    • Further Info
    • News & Events
    • HTLV Resources
  • Blog
    • Your Journey