Disabled cry for inclusion towards ending HIV epidemic

While significant scientific and social research has looked into the causes and effects of HIV on the global population, little attention has been given to the effects and risks of AIDS-related illness on people with disabilities.

While significant scientific and social research has looked into the causes and effects of HIV on the global population, little attention has been given to the effects and risks of AIDS-related illness on people with disabilities.

Many of the four million people living with a disability in Tanzania are currently excluded from accessing health information and critical HIV services. Tanzania therefore needs to adjust and adapt its national HIV and AIDS response in order to reach them.

It is an issue that was discussed in January, when the Eastern Africa National Networks of AIDS Service Organizations (EANNASO) organised the first meeting of the new Regional Platform for Communication and Coordination on HIV/AIDS, Tuberculosis and Malaria for Anglophone Africa. The platform is being funded by The Global Fund.

Albinism is considered a disability as it is a genetic condition which involves visual impairment and skin which is delicate and irritable when exposed to the sun.

In her keynote address when opening the EANNASO meeting, Fabiona Chunda an albino, married woman, mother of three children and a professional nursing midwife in Tanzania said: “My experience of living positively for the past 11 years, and coping with challenges of albinism is a story in itself, but I can proudly say I am living testimony of living positively and I am happy to share that my husband and my five-year-old child are [HIV] free.”

Myth puts albinos at greater risk of HIV

In Africa, there is a myth that having sex with an albino will cure AIDS. This means albinos face a larger chance of contracting HIV through sexual attacks. It is just one example of the difficulties disabled people face in relation to HIV. But despite the challenges they face, disabled people are often invisible in efforts to end HIV.

Chunda said: “Although Africa is the most affected and has benefited from about 60 percent of all Global Fund grants, people with disabilities are just not there yet despite tremendous success.”

“Disabled people, as part of a bigger definition of ‘key populations’, are not disease-proof, not to HIV. Disabled people and other key population groups are at higher risk of infection compared to the general public. Physical disability or any other groupings due to health behaviour does not mean mental unfitness. Engage us in a solution-building process and we will surprise you on what we have to offer,” said Chunda.

Greater focus needed on disabled people and HIV

Chunda added that the last three decades have shown us that science and a medical response is key but these alone have not been a magic bullet. “Multi-sectoral and integrated responses and an all inclusive approach are the way towards putting a stop to the epidemics of HIV, TB and Malaria. We, special community groups, can and want to engage in Global Fund processes and national responses against HIV, TB and Malaria,” said Chunda.

Maurine Mulenga, Global Fund Coordinator for the International Community of Women Living with HIV (ICW), agreed with Chunda saying: “People with HIV who are disabled are equal partners in this space and they need to demand services. They need to push for these discussions because we know that everyone’s voice is meaningful in order to join forces to end the epidemic.”

Yet, until recently, the impact of the HIV epidemic upon people with disabilities has received little attention. For instance, out of the 10,000 scientific papers presented at the Bangkok AIDS conference, only twenty focused on HIV and disability (Jansen et al, 2004). The most comprehensive assessment of HIV to date – the UNAIDS 2008 Report on the Global AIDS Epidemic – looked at the impact of the virus on many different sections of society but not on disabled people. A recent report on HIV in the Great Lakes Region failed to identify people with disabilities as a particularly vulnerable group. In short, the research context in the area of HIV and disability is – with some notable exceptions – characterised by neglect.

More inclusive approach still needed

The Regional Anglophone Platform ended with a clear understanding of its intended added-value for increasing civil society and community organisations’ engagement in all stages of Global Fund processes. It also identified tools, guidelines, methodologies and information packages that will support the development of a clear roadmap on support to civil society and community group engagement in Global Fund processes agenda.

However, although the issue of disability was a focus during the opening of the meeting, there was no follow up throughout the meeting and no strategies were identified to specifically help disabled people engage in Global Fund processes.

This must change if disabled people are to be meaningfully included in Global Fund processes. To end the epidemic, no one should be left behind. Deliberate efforts should be made to ensure that the needs and voices of key populations, including disabled people, are included in the response to HIV, TB and malaria.

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