On World AIDS Day 2020
On World AIDS Day 2020 remember that 25% of people living with HIV have disabilities
“I entered the counselling room. There was a person, whom I was assuming was supposed to be counselling me. As I walked in I saw the health worker saying “Oh shame isumumu”, which means deaf and dumb. When I sat down it was very obvious that the health worker was uncomfortable, because she couldn’t communicate with me at all.”
Meleste’s experience (as documented by the movie “knowing the unknown”) is not uncommon. He is a young gay man from Zimbabwe, and he has a hearing impairment. While reaching key population groups is recognised as critical for achieving 90-90-90 by 2030, people with disabilities are often left out. This neglect is an important oversight as one billion people worldwide have disabilities and there is a strong link between disability and HIV. As a matter of fact, at least 25% of people living with HIV have disabilities. People living with HIV often have hearing, physical or cognitive impairments, and developmental delay is common in children.
Why is that the case and why does this matter?
First, people with disabilities have a higher risk of HIV. That’s as a result of behavioural factors, such as higher frequency of sexual violence and paid sex, but also because people with disabilities face difficulties in accessing HIV prevention services and testing. For instance, people with disabilities are often excluded from sex education and are not supported in accessing sexual health services due to inappropriate assumptions that they are not sexually active. Lack of awareness of HIV among people with disabilities and accessible testing also hampers efforts to prevent transmission and to reach the target of 95% of people living with HIV being aware of their status.
And then, once a person with disabilities is HIV-positive they experience a range of barriers to accessing health services, as we described in the Missing Billion report from 2019. These barriers mean that people with disabilities who are HIV-positive are often excluded from HIV care, such as testing, or getting anti-retrovirals (ART) or treatment for co-infections. Consequently, people with disabilities will have a lower adherence to HIV treatment because they lack the necessary access to healthcare and wider support. Inaccessible healthcare will therefore make it impossible to reach the target for HIV epidemic control.
Consideration of disability is therefore critically important for HIV epidemic control, and specifically, the ability to reach 90-90-90 targets by 2030. HIV policies and programmes must increase their focus on disability and ensure that their programmes are inclusive of and accessible to people with disabilities. They must also strengthen links with rehabilitation services, so that people living with HIV-related disabilities can experience the best possible quality of life, and to thrive as well as survive. Better data and human-centred design of services are critical to inform these improvements.
In our work on the Missing Billion initiative we have highlighted this issue and its importance to HIV control. The Missing Billion initiative is focused on strengthening health systems so they work for everyone, including for people with disabilities. One of our work pillars is to work with global health funders to help them review and adjust their investments and programs. Specifically, on HIV, the Missing Billion initiative is working on a toolkit for HIV donors and implementers, and we invite all interested stakeholders to engage with us on this.
Today, on World AIDS day and in the week where we will also have the International Day of Persons with Disabilities (December 3), we urge HIV programmes to consider this issue, urge you all to become informed, engage with relevant partners, and start to make the change towards fully disability-inclusive HIV programmes.
References
Knowing the Unkown by Jill Hanass-Hancock, South African Medical Research Council
De Beaudrap P, Beninguisse G, Pasquier E, et al. Prevalence of HIV infection among people with disabilities: a population-based observational study in Yaounde, Cameroon (HandiVIH). The lancet HIV 2017; 4(4): e161-e8.
AVERT. People with disabilities, HIV and AIDS, 2017.
WHO. World Report on Disability. Geneva: World Health Organisation; 2011.
Bright T, Kuper H. A Systematic Review of Access to General Healthcare Services for People with Disabilities in Low and Middle Income Countries. Int J Environ Res Public Health 2018; 15(9).
Banks LM, Zuurmond M, Ferrand R, Kuper H. The relationship between HIV and prevalence of disabilities in sub-Saharan Africa: systematic review (FA). Trop Med Int Health 2015; 20(4): 411-29.
Ensink RJH, Kuper H. Is hearing impairment associated with HIV? A systematic review of data from low- and middle-income countries. Trop Med Int Health 2017; 22(12): 1493-504.
Bernard C, Dabis F, de Rekeneire N. Physical function, grip strength and frailty in people living with HIV in sub-Saharan Africa: systematic review. Trop Med Int Health 2017; 22(5): 516-25.
De Francesco D, Underwood J, Bagkeris E, et al. Depression, lifestyle factors and cognitive function in people living with HIV and comparable HIV-negative controls. HIV medicine 2019; 20(4): 274-85.
Devendra A, Makawa A, Kazembe PN, Calles NR, Kuper H. HIV and childhood disability: a case-controlled study at a paediatric antiretroviral therapy centre in Lilongwe, Malawi. PLoS One 2013; 8(12): e84024.
Rukuni R, McHugh G, Majonga E, et al. Disability, social functioning and school inclusion among older children and adolescents living with HIV in Zimbabwe. Trop Med Int Health 2018; 23(2): 149-55.
Myezwa H, Hanass-Hancock J, Ajidahun AT, Carpenter B. Disability and health outcomes - from a cohort of people on long-term anti-retroviral therapy. SAHARA J : journal of Social Aspects of HIV/AIDS Research Alliance 2018; 15(1): 50-9.
Marsh K, Eaton JW, Mahy M, et al. Global, regional and country-level 90-90-90 estimates for 2018: assessing progress towards the 2020 target. Aids 2019; 33 Suppl 3: S213-s26.