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Focus on Disability: The downside of improved HIV care
  • Focus on Disability: The downside of improved HIV care

Copyright: Pascal Deloche/Godong / Panos

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  • People with HIV are surviving longer, but many are developing disabilities

  • HIV, its treatment or related infections can harm hearing, sight and mobility

  • We must ask HIV patients about their disabilities and the services they need

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“We have bent the trajectory of the [AIDS] epidemic. Now we have five years to break it for good or risk it rebounding out of control,” said UNAIDS executive director Michel Sidibé last month as the agency announced plans to increase antiretroviral drug availability. [1]

With World AIDS Day (1 December) passing earlier this week, it’s worth remembering how far we’ve come. Even in low- and middle-income countries, nearly two thirds of people who need antiretroviral drugs receive them. [2] As a result, deaths from AIDS-related causes have plummeted, even in the worst-affected parts of Africa. [3]

This is fantastic. But it means HIV is morphing from a fatal disease into a chronic condition. Doctors are beginning to notice that, although people are now surviving with HIV, they are often developing disabilities. [4]

It’s rather apt then that, following World AIDS Day, today is the International Day of Persons with Disabilities. For disability is the new issue that health services need to tackle. And most need to do a better job of addressing it. 

What is the extent of the problem? Few scientific studies have assessed this question, but what evidence does exist suggests that HIV — or the drugs used to treat it or opportunistic infections — can damage hearing, vision and mobility, and cause dementia.

Children born with the disease may be particularly vulnerable. My research group did a study in Malawi which showed that one in three children with HIV reported some type of disability. [5] One in six had multiple disabilities. A colleague who is an HIV doctor told me harrowing stories about children she treated in Zimbabwe. Many of them had impaired sight, hearing or cognition. Some had developed physical disabilities after suffering strokes.

Last week, I met a rehabilitation team working in a rural clinic in a part of KwaZulu-Natal in South Africa where one in three adults is infected with HIV. Amazingly, 85 per cent of those needing drugs are receiving them. I met the rehabilitation team who were doing outreach in a rural clinic. They were providing services for people with hearing or physical disabilities, but said they were struggling to help everyone who needed them.

They had given up asking whether their clients had HIV, as the answer was almost always yes.

Despite all this, disabilities are rarely recorded in medical notes. In our Malawi study, only a third of the children with HIV-related disability had any disability or special needs documented in their medical records. This implies that the doctors are not routinely asking about disabilities. And only two countries in Africa consider disability as a possible outcome of HIV in their national strategic plans to tackle HIV. [6]

What can be done? Firstly, doctors should ask people with HIV at checkups if they have difficulties seeing, hearing, walking or understanding. Those who say yes can be referred for further assessment and treatment. The HIV clinics also need to strengthen their links with disability and rehabilitation services. These changes can be supported by changes in policies or strategies, such as the HIV national strategic plans. And we need studies that will show us how many people with HIV have disabilities and what services they need to have long and enjoyable lives.
 
Hannah Kuper is the codirector of the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine, United Kingdom. She can be contacted on [email protected] 


References

[1] Sarah Boseley UN report urges rapid and tough action to beat AIDS epidemic by 2030 (The Guardian, 18 November 2014)
[2] Antiretroviral therapy (ART) coverage among all age groups (WHO, accessed 3 December 2014)
[3] Fast-track: Ending the AIDS epidemic by 2030 (UNAIDS, 1 December 2014)
[4] Jacob Bor and others Increases in adult life expectancy in rural South Africa: valuing the scale-up of HIV treatment (Science, 22 February 2013)
[5] Akash Devendra and others HIV and childhood disability: a case-controlled study at a paediatric antiretroviral therapy centre in Lilongwe, Malawi (PLOS One, 31 December 2013)
[6] Jill Hanass-Hancock and others Inclusion of disability within national strategic responses to HIV and AIDS in Eastern and Southern Africa (Disability and Rehabilitation, 2011)
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