Overview
Evidence indicates that a high proviral load, considered to be 4%* or above, appears to increase the risk of certain HTLV-1 associated conditions. Currently, the recommendations for management for this group (excluding the breastfeeding group) do not differ to those for patients with a low proviral load, due to a lack of evidence that outcomes are impacted by differences in management.
While there are low levels of evidence across HTLV-1, this area in particular lacks evidence.
Recommendations
Caring for patients living with HTLV-1 should focus on health promotion, including promoting cancer screening and cardiovascular risk reduction. The focus should include lifestyle advice, which normally forms part of the annual health check. This includes advice on diet, regular exercise, adequate sleep, and alcohol and tobacco consumption.
During annual health checks, people living with HTLV-1 should be assessed for HTLV-1-associated conditions and provided with education to reduce the morbidity that HTLV-1 associated conditions can have. This care plan could include:
- Taking a screening history for HAM/TSP; asking about new urinary symptoms or a self-identified deterioration in gait. Further history and examination using the WHO diagnostic criteria should be guided by the screening history.
- Coupling the annual vision assessment with an opportunity to educate the patient that they are at risk of developing HAU, including the advice to present urgently if new vision symptoms develop or there is a change in vision. If the patient has a history of previous HAU, this is an opportunity to acknowledge that it can reoccur and the importance of treating urgently if it does.
- Annual skin examination looking for signs of infective dermatitis in the child, adolescent and young adult population (see infective dermatitis section for diagnostic criteria).
Identification of HTLV-1-associated conditions should result in referral to a specialist service.
It is not currently recommended to perform pro-viral load testing for patients living with HTLV-1 who are not pregnant, planning pregnancy or considering breastfeeding.
For clients who are known to have a high pro-viral load but are not pregnant, these guidelines do not currently recommend any additional care beyond the routine recommended primary care health activities for people living with HTLV-1.
What is HTLV-1 Associated Stigma?
HTLV-1 infection has the potential to be associated with stigma. Health-related stigma is a social process where people devalue or exclude others based on a perceived health condition or characteristics associated with that health condition.
Stigma is a barrier to health-seeking behaviour, engagement in care and adherence to treatment across a range of health conditions. It enables discrimination that denies the individual or group full social acceptance, reduces individuals’ opportunities, and fuels social inequalities. Stigma influences population health outcomes by worsening stress and psychological and behavioural responses, undermining social relationships, and exacerbating poor health. Health care providers’ actions can either reinforce or reduce stigma. The experience of stigma for Aboriginal and Torres Strait Islander people is complex, often entwined with experiences of racism and discrimination.
HTLV-1 infection may be associated with stigma due to certain characteristics, such as transmission causes (sexual contact, blood exposure) and a lack of public awareness and understanding.
HTLV-1 related stigma could potentially be driven by fear of infection, or anxiety related to knowledge of a life-long, untreatable disease with potentially serious outcomes.
Given that social norms and accepted best practice promote breastfeeding, women who choose not to breastfeed, or to limit breastfeeding, irrespective of HTLV-1 status, may experience stigma related to their choice of infant feeding.
Reducing HTLV-1 Associated Stigma
Reducing stigma related to HIV requires both systemic and individual level interventions and it is likely that similar multi-focussed approaches are needed for HTLV-1.
Population-wide public health messages about safe sex and injecting drug use need to be tailored to local contexts.
At an individual level, developing an understanding of HTLV-1 will allow clinicians to work with patients to develop a shared approach to management and avoid contributing to HTLV-1 associated stigma and discrimination.
Other strategies to reduce stigma include the use of appropriate language for HTLV-1, prioritising lived experience and establishing therapeutic relationships between health professionals and patients.
For more information refer to Prenatal and Postnatal Care for People who are Pregnant
*This figure varies depending on the literature. The figure of 4% has been chosen to be consistent with UK guidelines.
References
- Matsumoto C, Sagara Y, Sobata R, Inoue Y, Morita M, Uchida S, Kiyokawa H, Satake M, Tadokoro K. Analysis of HTLV-1 proviral load (PVL) and antibody detected with various kinds of tests in Japanese blood donors to understand the relationship between PVL and antibody level and to gain insights toward better antibody testing. J Med Virol. 2017 Aug;89(8):1469-1476. doi: 10.1002/jmv.24802. Epub 2017 Mar 14. PMID: 28252206.
- Imperial College Healthcare. Brief Clinical Guidelines for the Management of HTLV-1/2 Infection. London: National Centre for Human Retrovirology (NCHR); 2024.
- World Health Organization. Regional Office for the Western Pacific. Scientific Group on HTLV-I Infections and Associated Diseases, Kagoshima, Japan, 10-15 December 1988 : report. 18 (WHO Regional Office for the Western Pacific, Manila, 1988).
- Cama E, Beadman M, Beadman K, Hopwood M, Treloar C. Health workers’ perspectives of hepatitis B-related stigma among Aboriginal and Torres Strait Islander people in New South Wales, Australia. Harm Reduction Journal. 2023;20(1):116.
- Stangl, A.L., Earnshaw, V.A., Logie, C.H. et al. The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Med 17, 31 (2019). https://doi.org/10.1186/s12916-019-1271-3
- Russell PS, Birtel MD, Smith DM, Hart K, Newman R. Infant feeding and internalized stigma: The role of guilt and shame. Journal of Applied Social Psychology. 2021;51(9):906-19.
- Allan B, Machon K, National Strategic Framework to Address HIV Stigma and Build the Resilience Capacity for People Living with HIV, National Association of People with HIV Australia, 2019, https://napwha.org.au/resource/national-stigma-and-resilience-framework/
