HIV and disability case study

MURIEL MAC-SIENG: In this step we’ll discuss HIV and disability to look at the links between long-term health conditions and disability. I’m Muriel Mac-Sieng, one of the collaborators on this MOOC. The case studies shared here are derived from my previous seven years working with international non-governmental organisation, Handicap International (HI) on HIV and sexual and reproductive health among people with disabilities in sub-Saharan Africa and Southeast Asia. Why are we interested in HIV and disability? HIV and AIDS remains one of the most widespread disabling epidemics worldwide, with 36.7 million people infected by HIV in 2016, among which more than two-thirds are living in sub-Saharan Africa and half are women. The disease leads to impairments, activity limitations, and reduced social participation.

As a potential result of HIV and AIDS, clinical signs, and side effects of antiretroviral drugs, people living with HIV can experience episodic and/or chronic conditions related to loss of hearing, vision, and speech, stroke and paralysis, and physical and neurocognitive impairments, for example. As well, the disease can have long-term effects on the neurocognitive and development trajectory of children living with HIV.

HIV and AIDS can have severe impact on the quality of life for both people living with HIV and their family and community, hence requiring a comprehensive HIV continuum of care accessible to all, including people with disabilities, from prevention counselling, treatment, community and home-based care, to rehabilitation services, such as physiotherapy, occupational therapy, and provision of assistive devices, to name a few. A systematic review and meta-analysis on the HIV prevalence among adults with disabilities in sub-Saharan Africa revealed a higher gradient of HIV risk among people with disabilities compared to their non-disabled counterparts and among women with disabilities, when compared to other groups of disabled and non-disabled people.

Findings challenge the common misconception that people with disabilities are not at risk of HIV and tell us that the feminisation of the epidemic also exists in the disabled population. In the next few slides, I’ll share with you two international good practice case studies which have addressed disability, including rehabilitation in the context of HIV and AIDS. These are drawn from country-based evidence where local initiatives have been deployed to remove physical, attitudinal, and structural barriers for people with disabilities at risk of or living with HIV and those living with HIV who became disabled. Prior to 2008, Senegal did not target people with disabilities in its national HIV and AIDS response.

To address this, HI and partners, such as SWAA Senegal, implemented two projects showing that it was possible to address the policy barriers and include disability in HIV prevention on one hand, and include basic rehabilitation services, such as rehabilitation screening in the HIV and AIDS continuum of care, to address the rehabilitation needs of people living with HIV affected by disabling AIDS-related conditions. As a result of systematic advocacy efforts spanning over eight years, similar programme studies among people with disabilities were conducted in three regions of Senegal along with HIV prevention and treatment for people with disabilities at risk of or living with HIV. Pilot rehabilitation projects for people living with HIV have been implemented.

Furthermore, disability has first been included in the National AIDS Strategic Plan of Senegal in 2011 and, more significantly, a second time in 2016. The second case study I’d like to share with you is a project implemented in Cambodia to improve the accessibility of HIV prevention and sexual violence protection among young deaf women in rural areas. HI partnered with Deaf Development Programme of Maryknoll, DDP. On one hand, HI built the capacity of deaf trainers on HIV prevention and sexual and reproductive health rights. On the other hand, DDP taught sign language to the health staff of HI. For several months, parents of deaf women and local authorities were mobilised in the organisation of awareness raising so to increase their buy-in.

As a result, DDP decided to replicate this programme to other regions where they are active. Furthermore, local authorities decided to mobilise governmental funds to pursue the inclusion of disability in local planning development. If you’re interested to learn more about the entire six good practices on disability inclusion in HIV programming and policy, please consult the website provided on this slide and listed below in the See Also section.

As briefly illustrated by these two case studies, with policy-focused interventions as well as structured community-based initiatives, very simple interventions, such as installing ramps at health facilities, adding Braille onto antiretroviral drug boxes, adding the pictures of people with disabilities in IEC (Information Education Communication) material, or using sign language on HIV prevention awareness raising posters can make a big difference in improving the accessibility of HIV and health-related services to people with disabilities. If you’re interested to learn more about the intersections between disability, HIV, sexual and reproductive health, and rehabilitation, additional resources are listed here and below. I hope you enjoyed learning about HIV and disability. And if you have any questions or comments, please post them in the comments section below.